History

Friday, December 31, 2004 9:30 PM

How is everyones New Years so far???

HAPPY NEW YEAR EVERYONE!!!!!!!!

Thank you all so much for all the uplifting emails and guestbook signings. It means alot to me. I know I shouldnt get so down sometimes but you just cant help it somedays.

I cant believe almost a whole year has gone by since Jacob was diagnosed. (Jan 9th) What a year it has been. I am soo blessed to be here with my angels tonight!

Me and Alyssa and Jacob are settling in the New Year with just us. I went and got some hats and horns today so it would be more exciting for Alyssa. Tiffany came here today to help with Jacob. She missed him. Spoiled him again with clothes from Old Navy and The Bay! Thanks so much tiff. I think she likes shopping for him more then I do!

Alyssa came home yesterday and her dads family I guess wanst sick after all??? So Alyssa stayed home with me. We rented movies last night and stayed up late to watch them. I missed her so much.

Yesterday I got a HUGE surprise. Scott told me his sister Janet wanted to stop by and visit. He had some stuff to do so he couldnt come with her....SO HE TOLD ME!!! At about 9:30 she showed up with Scott! I was sooo surprised. I thought I had to go all week without seeing him. I was so happy that he came with her. I missed him! Jacobs nurse was here so we all went out for lunch and did a bit of my running around. They couldnt stay long as Janet had to pick up her two sweet little angels. Her daughters Emma and Allie are soo cute. I have a pic of Emma here on the comp somewhere.
Here they are...
This is Emma WHAT A DOLL EH!

And here is Janet with Emma and Scotts twin brother Mike!
What a shock to see his twin eh!

Mom has been up here almost everyday this week! She sure misses Jacob when she isnt here. He talks and talks away to her. I dont understand why he wont do that for me? LOL But man does he ever talk to her. Today mom said when me and Alyssa were out getting a few things today Tiff gave him a bath and man was he ever talking to mom and Tiff!

I am adding new pics up top. I print all my journal entries so I dont want all the photos in the journal entries. So look up a bit higher and you will see them.

Well I should get back to the kids. We are going to take some pictures with our hats and horns!!

I pray for everyone to have a wonderful New Year. May 2005 bring you all happiness, health and memories.

OMGosh!!! youll never guess what! While I was doing this update Alyssa was in the kitchen making lots of noise... Well she just came out and had gotten us some New Years snacks. Can you believe that. She peeled oranges and put them on a plate, put m&ms, and skittles in a bowl, cut up some cucumbers, empties a box of Toffee chocolates in a bowl for us, and poured a glass of OJ with ice for her and even poured me a Smirnoff Ice with ice cubes in wine glasses for us...... OMG I am just blawlling here... Am I ever blessed to have such a wonderful daughter that brings such joy to me. Also my angelic son. A wonderful family that is sooo supportive to us. And now even a special someone that has fallen into my life and I have fallen in love with. Ohh I am so uplifted right now. What a special daughter I have. Times like these just make you tear up and say I am soo lucky!

Love Angela,

Wednesday, December 29, 2004 6:15 PM

Here is some pics of my baby bear today. I had to shut off the flash to get him to smile. As soon as the flash goes off he closes his eyes. LOL He doesnt like to get his pic taken anymore. Guess he just doesnt like the flash!

This is his perfect smile without the flash. I love his smile. It could light up the room...

Here he is watching his movies. He loves to watch them still so much. I wish I could be as entertaining as a movie! lol

I hope everyone is having a good week. We are nearing the 100,000 visitor. If this is you let me know. Ill send you a photo of Jacob of your choice. If you would like an 8/10 of him of any pic or a 5/7 or whatever just let me know. If you want to wait till you see all the photos on his photo webpage then you can do that also. But I really want to know who is that visitor! lol just silly little things I guess. I cant believe he has had that many people visit his site. Wow eh!

Alyssa should be home from her dads tomorrow. I miss her like crazy. You realize how much she does for me when she is not here. Its tooo quite too. Pray that she is not sick when she gets home. Her dad wasnt going to take her because their family is all sick. I thought that was a good idea but she was in hysterics and miserable so me and mom thought we had to let her go. It had been a few months since she has seen him. I wil send her to moms for a day or two to make sure she isnt carring anything.

Jacob and me have been cuddling mostly lately. I like our time together. I miss it. It gives you a bit of too much time to think of things though when you are not busy. I had a nurse yesterday so I got to go and get some of Jacobs supplies. I wanted a scale with ozs on it to be able to weigh Jacob with me holding him to see how he is gaining with his new diet changes. He was down to about 18 pounds from about 22 last may. So needless to say I was not happy with his weight. In November he was about 19 pounds. Im happy to say that Jacob is now 21.2 pounds!!! YEAH YEAH YEAH> HE is gaining some of his weight back. I am sooo happy about that.

His g-tube was draining some of his food back out of it yesterday. I was worried that he would need another GJ-tube change. But after 2 suppositories last night and 5 big poops he is pretty cleaned out. Im happy about that! Doing the poopy dance.

You know today I was thinking of how am I going to get his video clips on his website? I needed to get them from a VHS tape to the computer and onto the website. So I got out the phonebook today and called one of the web designers phone numbers. The first one I called I said "is it possible to get his VHS tapes onto the computer to his website?" he says yes there is lots of ways to do it. So why and what is it for? I said that it is for my son Jacob he has been on chex many times and I want to put the clips on the internet on his website so everyone can see it. HE was like really...well no charge Ill do it for you and if you need anything else with his site let me know...WOW can you believe that. I am soo happy. There is still amazing people out there..including all of you of course! Im so happy about that. He is getting the clips tomorrow so it should be up soon! YEAH!

You know, do you ever feel just crappy? I feel just kinda miserable today? Not sure why? Mom and dad came up today and we went through all the bags of alyssas old stuff and put them all back into the van and had a great visit. Then they left cause they had company coming.

After they left Jacob had a nap and I just sat there looking at my angel. You know he never asked for this life. I never thought Id have to be dealing with all this when I found out I was having another baby. I dont feel sorry for myself but I find myself still asking why? Why does my son have to fight for everything. Yesterday I had to phone the police station to find out about a nanny cam. If I am alowd to video tape his nurses? Do I have to tell the agency? All that kind of stuff. I got thinking you know what if they just didnt do anything with Jacob when Im gone. They seem fine when Im here. I worry about him just sitting somewhere not getting played with or entertained and he cant tell me. He cant say that he was bored or not turned or changed. It makes me sick to think about this but I have to protect my son. I just dont feel comfortable leaving him anymore. He is getting older and I cant stand the thought of him not gettting the care he deserves. SO needless to say it is legal and I can. So I have to look into how much it costs to get one of those and install them. Hide it or whatever??? Where do you get one of these? Who do you call? How do you do it without them knowing? Am I crazy to think of one of these? Am I that crazy that I need one of these? I feel crazy at times. Maybe I am going crazy? I dont know...

Then I got thinking about all that I have to get done in the new year. I can only get out of the house a few hours a week. And I wanted to start at the gym because now that I have an actual scale that works!! Lets just say my old one is broken by about 10 pounds. Can you say diet in the new Year? But I dont have time to go.

I need to start working on Jacobs power wheelchair. I can imagine the fight to get that. Lily (link above) just got the info she needs to get hers. She is also a weak type 1. Many of the type 1 kids have all different types of chairs that gives the kids their legs. They have tiny joysticks and lets the kids be mobile. Can you imagine him driving around. Well someof them had their chairs as early as 21 months. If it takes MONTHS go get them going on it well they have to start on it NOW! Thats gonna be a huge fight. But Amy lilys mom is sending us all the letter of medical necessity and what all the chair needs. She says it awsome info and anyone who doesnt know about sma and says they cant drive one will look at this info and all the parts that her chair will have and see that it CAN be done. But then you get to thinking OMG if he gets a 1000 pound or 500-600 pound wheelchair how do I carry that up to my tiny apartment? How do I let him drive it on this floor? Cant be done. So if I get moving on the wheelchair then I have to find another apartment that has wheelchair access. Or get a modified house? How the heck do you do that when you cant even work? You are home taking care of your child so he lives and now Im stumped as to what to do there. I dont want to move too far. I dont want alyssa to have to go to another school. She deals with so much. Being the new kid is just to much for her to deal with . If I ever move to the other side of town then its going to be when I move to a perminent house. I need to stay here as it is geared income houseing. The only house I can afford at this time. It sucks that I cant give my son the things he needs. If he gets a chair he cant drive it? I cant carry it upstairs. Then I have to modify the van for sure. Does it ever end????????

Also I have to start begging for him to get into the augumentitive communications program that we have been on the list since his birthday..no july. And a letter we got saying that when he was on the 3 month list we would be notified??? Well I guess we are stll not on that list? I mean COME ON. I need to start learning and teaching Jacob to communicate with me. He needs his switches and adaptors to be able to play on his own. God does it ever end.

I need them to start working on getting us his stander. He will get the tumbleforms 45 tristander I think. He needs to stand to help his bones not be so dense. They are going to end up see through and glass and breakable if he doesnt start standing on them. And his contractors will get really bad. They are pretty bad already.

I need the van to be modified. I need to get the stroller apporved on ADPs list so he can travel in it. I have the EZ on vest and need to get Jacob used to it.

Everything is a fight. I just dont know where to begin? I want so much for Jacob and dont know where to start or what to do first. I feel so helpless at times. Why does everything need to be so hard to do for your child?

I hate to think like this I really do but somedays you just feel crappy. Today is my crappy day. I miss things I guess. It is hard living like a hermit. Worring about who has a cold, will Jacob get another cold, when are we going to have to go to the hospital again. Will Jacob survive another cold. The last one was bad and they just get worse and worse everytime. Is Jacob happy? Can I do more? Should I be doing more? What else needs to get done? My head feels like its gonna pop right about now. Sorry for being so down but darn I just feel low and not know what to do.

I think that after talking to lots of the moms and reading stuff...I will never be able to change Jacobs disease. He will always have SMA. He will always have this, and nothing I can do will change that. Doctors will always tell me he is going to die. He wont live past two. Well he is getting pretty close to 2. They said he wouldnt make it to 1 and he has passed that by 4 months. I think that quality of life is better then quantity. I talked with Tiffany about this. And said you know Jacob used to love going for rides in the van. He loves getting out and about. Once the crowds die down I want to start taking Jacob on outings and trips and to the mall and stuff. Take a bottle of purell and away we go with all his machines. Its not fair to him or me to be cooped up in here all the time. What kind of a life is that for my son. Just seeing how happy he was in Alyssas room really hit me hard. Another room in the house and he is all happy? What is with that. I have secluded my son so much. I worry about germs and stuff. You have to make these decisions. If he isnt exposed to germs his immunity wont develop and he will be more susceptible to things also. Its kinda a catch 22. But I think Jacob deserves to get out and about. Ill have to live with if he gets sick or a cold. Just one person coming over could have been in a store and came in contact with 1000s of germs and jacob coud get sick and die from just that alone. Without seeing many things. I think it is worth the risk to have my son happy. Of course we will be careful. A cold to me or alyssa we will get over but to him it could kill him. If he is going to die from a cold it better be a cold that brought a HUGE smile to his face first.

I just dont know why I feel like this. being alone for a few days in this house and just thinking does that I guess.

Anyway enough venting for now. Sorry to get down on you. Ill be better in a few days.
Angela

Monday, December 27, 2004 5:40 PM

Happy Holidays everyone!
How was your Christmas? I hope and pray everyone got to enjoy their CHristmas. We had a great time...ok here we go witht the update!

Friday we woke up to the interview. Chex TV phoned and wanted to do a Christmas special on Jacob. Oh yah I told you that already! Mom came up early to let me shower and get ready. Bath the kids and get them ready to be on TV. ALyssa was excited. Well the interview went well. I hate to see myself on TV. It never looks or sounds like me. Alyssa did a GREAT job talking about her brother and how happy she was to have him home for Christmas, and what she does to play with and entertain him. IT went so well. Papa Bruce and Dale were here too for a visit and stayed to watch the interview.

My van was completely frozen shut still so I couldnt get someone to drive it down to moms. SO mom and Dan came up to get us in two cars. Us with all Jacobs machines and then another car for the presents. We got to moms about 3 I think and Jacob had not had a nap yet. So he was tired. First I had to lay him down for a nap so that he would not be so tired and stay awake and see all the gift opening!
He went right to sleep. He was so tired. Then I helped mom get the rest of the turkey dinner ready for supper. We snacked all afternoon on goodies. I was stuffed before supper. I love Christmas! We waited until the 6:00 news to watch the interview to see Jacob on TV first before dinner. IT wasnt on till about 630! Then we all got supper ready. I sat with Jacob in the livingroom beside the dining room so he wasnt alone. Its hard to include everyone in the same room. So me and Jacob had a good time! You can still see everyone in the dining room from the family room so it wasnt too bad. Supper was great as always. Mom puts on a great Christmas dinner every year. I love her cooking. No one can cook like your mom! Why is that. I try and it just is not the same!!!

After supper we all cleaned up and got ready to open the presents. By now alyssa was about ready to crack. She was sooo excited to get cracking and opening the presents. I got Jacob set up on the couch and sat beside him. We videotaped it all. Its hard to take pictures and keep track of everything and take care of Jacob and open presents. So we didnt get many pics unfortunately. But it was a great time. Everyone spoiled everyone. Im just glad the kids were into opening the presents. Jacobs favorite was a Jonny Deer Book and tractor from shannon the Jonny Deer FREAK!!! He loves it and was making car noises as we moved it in front of him. He loved it. After we opened the presents we just sat around and talked a bit. I had a conversation with my dad outside. I was thinking about a year ago we didnt know if Jacob had for sure SMA or not. Not until Jan 9th did we know. When we found out I was so upset that last year I was too upset to enjoy xmas with everyone and didnt get into it too well. I was sure I was certain that that was going to be our only Christmas with Jacob. BOY was I wrong. Not only was this his second Christmas but he is going to have many many more to come. Jacob is such a stong fighter and survives so much> He is here for years to come. But like I was saying I am so blessed and pleased to have my family together and spending Christmas. I am sooo happy we didnt have to be in the hospital. I couldnt be happier about that. I got part of my christmas wish thats for sure.

Later Scott called and was near Peterborough with Kyle on his way here. SO I told him to just come to moms cause I was still there. SO we had a small visit with him and my parents and by then it was about 11 PM so we had to get going and get the kids back home and into bed.

ALyssa was tired as was Kyle and Jacob. They all went to bed good and finally me and Scott got to finish all the last minute wrapping and stocking stuffers. Then we finally sat down for some down time. It was nice. I wish I had my moms fireplace. I love sitting infront of a fire and just feeling all warm. We hit the hay as it was about 2-3 am. I dont even remember what time we went to bed. Scott warned me that Kyle would be up at his usual time.... 6 AM!!! Can you believe that??? Im used to having to wake Alyssa up about noon if I let her sleep that long. So they waited till about 730 to wake us all up!!! Jacob DID NOT want to wake up! LOL But we put him on the floor beside the tree so he could see everything again. We again videotaped it all. Jacob would ohh hand ahhh at everythign we helped him open. Then when we put it down to open another one he would cry and fuss. THen when he saw we were opening another for him he was all happy agian! Im glad he got into it. Most at his age dont. But he was happy and enjoyed it. He LOVES ABSOLUTELY LOVES the presents Scott got him. They are Micro mini? Hot WHeels cars. SOOO Tiny and fit right in his hand. They are smaller then his hand and light. He holds them all the time now. I gotta find more for him. ALso his fisher price power touch system. He loves it. Many many things the kids got. Thank youto everyone who sent some gifts for the kdis and all the xmas cards. I am very thankful for you all sending some stuff for the kids to open. They of course coulndt wait till xmas mornign to open the stuff in the mail. ALyssa opened it the days we got some packages. She just cant wait....well neither can I!!!

It was a great morning. Shannon came and helped with some of the mess and played with Jacob as I got ready ofr mom and dad to come up too. They got here about 11 I think. And of course brought leftovers. Whoo hoo I love turkey! We all had a great day. Mom finallly got to sleep with Jacob. I took himand all his machines upstairs to my bed so mom could lay him down for a nap. She says it was the best sleep ever. She loves to cuddle and sees now why its so hard to get up after laying with him. She loved it. We had a great day. They left about 5-6.

Scott and Kyle stayed overnight again. We spent the rest of the night playing cards and games with the kids. It was a great night. We went to bed early Sat ngiht. Much needed rest.

Sun Scott left with Kyle early about 9 am as it was snowing and Kyle had to get going. Scott had to take him here and there visiting and then back to him moms. He liked everything and had a great time.

Alyssa and me had a great night last night. Just sat around and hugn out and watched xmas movies on tv. It was a great night. Alyssa went to bed great. Jacob went to sleep good too. He has been PERFECT. Needing some more suctioning but over all he has really been in perfect health. On ly on pappy for naps and overnight. I have to make him poop still but so far he is doing pretty well.

I am ever so thankful for being able to be home to enjoy the holidays with my family and kids and everyone I love. I could not be happier or more greatful for everything.

My prayers go out to those having to go through the holidasy without their loved one.

Happy Holidays and hope you all have a great week. Ill update soon again I promise. Im just going to be cleaning and putting all this stuff away over the next few says. Again I only have a nurse Tues and Thurs this week. Last week was no nurse. SO its tough to get things. done.

Alyssa just went to her dads today for a few days. UGH I hate it when she is gone. BUt I will be enjoying mine and Jacobs special time together. I just hate being alone alot. Only a few days. IT wont kill me! LOL
Oh the paper called today too. They were going to come and take an interview with Jacob too. THey musta got wind that the TV station did an interview and had to do one too! Well they never showed up. WOW eh. Jacob sure has a lot of people loving himand wanting to see how he is doing. I wonder who makes them call and see if I want an interview done or not??

Have a great few days!

ALl our love,

Sunday, December 26, 2004 12:15 PM

I just added some xmas pics above. Im tired and need to do a long update. Ill update in the morning if someone comes over to visit. If not then when he naps tomorrow afternoon! Hope everyone had as great a Christmas as we did.

My prayers are with those who have to face Christmas this year without their beloved children. Im so sorry for you having to face these days without your angels. My thoughts are with you.

Angela

Friday, December 24, 2004 10:15 AM

What a great Christmas Eve so far!!!
Jacob slept great last night. Had a few choking episodes yesterday but overall is still in pretty good shape! I couldnt be happier.

This morning we wokeup to the mailman again. We got a beautiful box from Madeline. Thank you so much for all the great stuff for the kids...and me! I love you too and am thankful for all the visits in the hospital from you. I hope you and your family have a great day. Im so happy for you Madeline. I cant wait for the updates!!!

Also we got a package from Laura from Friends of Allie! Thank you so much for the Blues Clues DVD for Jacob and Alyssa loves her stuff! Jacob has already watched his new movie! Again thanks so much. It means alot to me and the kids to know that so many people have fallen in love with my angel.

Well how special is Jacob??? So special and loved that Chex News just called and is coming at noon to do a Christmas special on him. IT is going to air tonight at 6 and 11. If you get satalite you can see it on Chex TV News. What an angel he is eh! To have the news call to do updates on him for things like his birthday and now Christmas. It really brings it home as to how special he really is. LIke I didnt already know!

I hope and pray that you all have a WONDERFUL Christmas with your families. Remember to Kiss your children everyday and tell them you love them...for today is gone and tomorrow may never come... I love that quote!

Oh yah...Shannon just called to tell me what Ihad forgotten that Alyssa had said. Shannon asked her what she wanted to be when she grew up. She ALWAYS says a singer. But this time she said she wanted to be a clown to entertain children like Jacob and make them happy! That made me tear right up. How sweet is that!

Merry Christmas everyone. May you all be at peace and have a warm, comfy, cozy Christmas with all those you love. From our house to yours...Merry Christmas!!!

Scott is coming tonight sometime I cant wait to see him. Im sooooo excited about Christmas. Can you tell!

We are going to moms today for Christmas dinner and unwrapping our gifts then tomorrow we willl be home for xmas morning with the kids and then mom and dad, dan and shannon will be here later inthe am. I couldnt get into the van this am to let it warm up. Everything is a block of ice. I hope we can later.

Love and prayers to all
Angela

Thursday, December 23, 2004 3:00 PM

Well thank you for all the prayers for Jacob. He is still holding his own. His fever came down through the day on Tuesday and then Tuesday night he spiked back up a bit. He finally pooped and I think that helped and had something to do with his fever. I have been having to 'make' him go alot lately? I might start him back on the Miralax again for a few days to get him more regulated? So far so good though. Power of Prayer.

Yesterday I got to go out and finish the rest of my shopping. Id get a whole bunch more stuff but my bank account wouldnt allow that! I know the kids are going to be having a wonderful Christmas. More so now that we know they will be together! Thats the BEST part of all for sure! Nothing beats being together with family at Christmas. Mom and Shannon watched Jacob for me while I finished up. He was sleeping when I left and was awake when I got back. Of course I called a few times to check ont them! ITs hard when your used to having a nurse and then you dont have one all week. You feel kinda stuck. Last night Jacob was having a bit of trouble with his secretions. Me and Shannon totally cleaned up Alyssas room to make room for the new stuff she will be getting. LOL We literally have about 8 garbage bags FULL of old clothes that dont fit anymore and toys she doesnt play with or use. She let us give away almost ALL her toys. She is just getting too old for most of the stuff now. She looked around her room after we were done I said "Alyssa do you realize you dont have hardly anything left in here? Are you sure you want to give this all away?" She says "seriously???" And her eyes popped out of her head! I dont think she realized what all she was getting rid of. But she is happy to be helping other people that dont have stuff like she had. Shannon told me something Alyssa said and I almost started to cry it was sooo sweet! I forget what it was now. Ill have to get her to post it and then Ill write it down.! Darn I hate forgetting stuff like that. The snow storm last night was sooo bad that Shannon stayed over night the roads were too bad! You shoulda seen Jacobs face when he was in Alyssas room! She used to watch him in there when he was a baby when I was having a shower and stuff. Pre- machines! But I think he remembered being in there. He loved it for sure. Sad that just another room in the house makes him so happy. Talk about a secluded life. After the new year when the crowds are thinneer out there me and Tiffany are going to be making more road trips with Jacob so he can get out and about more. I want him to experience so much more in his little life. Not fair to be cooped up in the livingroom all the time day after day. He knows really no different but I want himto have a great quality of life. When it comes down to it it is quality vs. quantity. To me anyway!

I have still be getting tons of Christmas cards everyday. Thank you all so much to those who sent one! Just beautiful! Even the ones for the kids. Alyssa reads each and everyone of them!

Scott and Kyle came down Tues night and stayed till Wed afternoon as Kyle had hockey game Wednesday night. He is REALLY excited for Chrsitmas just like ALyssa. She wants to open all the gifts already> I dont really know the plans for Christmas yet? Still kinda deciding and making all the arrangements.

Just wanted to let you all know Baby Bear is ok and doing better. Today his 02 was a little low again? But so far so good.

Ill be back tomorrow sometime to wish youall a merry Christmas and A Happy New Year. Im trying to make my way around to some of our friends and sign your guestbooks Im sorry if I dont get there till after Xmas Im just so busy and lazy anymore! Can you be lazy and busy at the same time? Maybe so busy you dont feel like doing anything right? LOL Thats what I end up doing. I have so much to do I dont even know where to start!

Thanks for visiting and signing the guestbook!
Have a great 1 day before Xmas Eve!
Angela

Tuesday, December 21, 2004 10:51 AM

Well I have some good news and some bad news... The bad news is more important so Ill start with that...

Unfortunately Jacob is running a fever. I didnt even notice until about 10:30... I cant tell you how much I am praying that he is not coming down with anything. Oh I hope not. He has a fever of 101.7 and Igave him some tylonal. I hope it comes down. I dont think a fever that high can be from just teething? His chest sounds clear, isnt even drooling, breathing is fine, not labored, his 02 is satting at 97--good and heart is 110--good again? He hasnt pooped in a day so Im giving him a suppository to try to get him to poop. I hope that is all it is... I just dont know if I can handle not being here for Christmas. Or having Jacob fighting for his life again over Christmas. It would totally devestate Alyssa if we were in the hospital over Christmas. There is only 4 more days till the big day. I PRAY and will continue to PRAY constantly that Jacob will stay healthy. He is still recouperating from his last tough battle. Man I dont ever ever want to see him that sick again. It nearly broke my heart. He is such a fighter. I know we will handle whatever God throughs our way I just hope Jacob can fight this off at home. Please let it just be teething or pooping issues. He is not as happy and talkative as he usually is. He sure would appreciate some keep well prayers. Thanks.

Ok for the better news... Me and Jacob were woke up by the door bell today! We have gotten some packages in the mail. The kids got their Secret Santa gifts from our SMA support chat group. We all signed up and sent another SMA family gifts. Ours went to Ashley Hodges and and she has SMA type 1 also..she is 3 and her baby sister Sara who is 6 months. We got ours from Kaitlyn who is 2 years and Type 1 also and her brother Liam is 6. The kids loved all the gifts...
ALSO Carol sent us a big package. Carol you shouldnt have. OMgosh . She spoiled us all. Jacob received a tickle me Elmo that was just a little something from her son that it too 'old' for him now. LOL Jacob gave him dirty looks at first and didnt know what to think of him. After seeing him for a bit he warmed up to him. Also an Elmo DVD which now he was watched 2x. And a Elmo puppet book! Jacob loves everything Carol. Alyssa got spoiled for sure. A snowcone maker! Yum! Love them! And a bratz makeup kit and hair and bead maker! She is going to a tea party today so she has made a few for the hosts. And Carol you spoiled me too! I was bawling reading the letter. She sent me and Scott our first xmas ornament. We gotta get a pic of us two to put inside it! And she made her own ornaments for us too! I love them. Also an angel willow tree. I have another one too! I love it Carol. And a friends ornament too! Going to hang that on my wall.
Carol thanks from the bottom of my heart. You shouldnt have, I love them!

We have been getting TONS of mail. Thank you to everyone who is sending all the beautiful cards and the wonderful messages in them. I cant tell you all how much I love you all! You all have helped make hard times a little easier. If I had the money Id send you all special gifts! I love you all...
May everyone jave a Blessed Christmas and a Happy and Healthy New Year!!!

Have you checked out Jacobs photo pages lately? Laura Stants has helped me make the pages even better! I love the new look Laura thank you sooo much!
Jacobs photo website

Love Angela and baby bear!

Sunday, December 19, 2004 11:20 PM

Well I see Scott has given you all a small update! lol

Well Yes I was a little nervous! lol

Ok we got up early and got alyssa off to school. Jacob slept pretty good Thursday night. He was doing really well and Martha his nurse got here about 8 am. We got showered and ready. I put Jacob on his pappy for the morning while I was out with Scott I feel better when he is on that so I know he is not having trouble breathing. Martha is a great nurse and totally devotes all her attention to Jacob. She reads to him and sings to him and just spoils him rotten. He loves her and cries when she leaves sometimes. Lol

Well we went and got our stuff done...my hair! You know how it is you cant meet anyone when your hair is not done!

Tiffany got here about 530, mom was already here to get alyssa so she could stay the night at her house and then she could take her to dance in the morning Sat.

I went over everything with Tiffany. We left her about 10 phone numbers to get ahold of us somehow if she needed to. Im sure she would never have called about anything anyway. We got on our way and went to his moms first. I got to meet his whole family. They are an amazing bunch of great people. They all are sweet, loving and very nice and caring. His mom Karen is so nice. She loves angels and candles like I do. She brought me right to her room to show me an amazing display and vigil she has up for all her kids and grandkids, and then our family. She had an angel with ornaments with all our names up and cards with the meanings of our names, and the xmas picture we gave her. Then a really big angel beautiful one with a card with a biblical poem about Jacob. She burns the candles for us all the time. I gave her a big candle for Christmas and she had it about half way burnt already!! I love candles too. I just cant have them burning all the time because of Jacobs oxygen but hey I still love them! Then I got to meet everyone else. YES Scott is a twin. His brother Mike, they are sopossed to be fraternal twins but omg there is almost no way. You really have to look to tell them apart. I was shocked to see him lol. His dad laughed and said Yup everyone has that same reaction when they meet them both at the same time! I can tell differences when he talked but man its pretty neat to see a double of the man you love! lol

I met his younger sister Janet who had her two beautiful girls there too. Emma is just a sweetheart. She is 21 months I think and just as cute as a button. Her sister Allison is 6 and they are both blonde and sweet. Emme hung around her mom alot so I got to see her more! It was funny we were talking to her and Janet asked her if she liked Dora the Explorer as she was walking away. She almost fell right over stopping in her tracks to see what we were talking about! It was sooo cute! I also got to meet his other sister Lori who is the youngest and has a daughter Shelise? (sp?) she is 9 and more alyssas age! Also another cutie. They were all busy playing so I didnt get to see the kids much. Lori is a beautie for sure. The who family is beautiful. I wasnt as nervous as we all started to talk. I think it went well. It was so weird to be without the kids. Like I was missing something. It has been SOOOO long since I havent been with them. I only called I think 4 times! Not too bad! Also his dad was there. He is very nice man. Smiles alot! Has alot to smile about, with such an amazing family!

Im glad I finally got to meet them all. It was great.
Then we went to his Christmas party and I got to meet many of the people he works with and talks about all the time. IT was fun. They had games and stuff to keep it entertaining. Yes Scott was good I would have taken my van but we werent sure about the weather and my tires are trecherous in the snow. So he wanted to drive so he didnt drink. I would have liked to see him have a few drinks and have a good time but he ensured me that he had fun. Just when we decided to leave it started to snow so it was a good thing we left when we did.
I missed Jacob so much.

Tiffany thank you so much for lettting me get out and meet his family it meant so much to Scott and I. We had a good time and owe it all to you. Love you girl.

Me and Jacob cuddled all day yesterday. I felt so bad for being away from him. We all just hung out and watched some christmas movies. It was good. I love just cuddling with Jacob and Alyssa. I had to let alyssa have her turn with Jacob every so often!

Is the weather horrible where you are??? Its -17 celcius now and going down to -25 with a wind chill of -37 celcius tonight. Wow thats pretty darn cold. My brothers car handle was frozen right up and when he went to open it this morning it snapped right off. Now he needs a new door! Thats cold!

Well have a good rest of the weekend and enjoy your week! Xmas is only 6 more sleeps! Im totally excited!
Angela

Friday, December 17, 2004 9:00 AM

PLEASE GO TO THE PROFESSIONAL PHOTO WEBPAGE HERE Click here then go to professional photos page THERE IS THE NEW PHOTOS THAT STACY FROM FRIENDS OF ALLIE MADE FOR ME AND THE KIDS AT THE BOTTOM OF THE PAGE! CHECK THEM OUT THEY ARE AWSOME!

Sorry for not updating all week. Ive just been busy and when not busy really lazy! You know how it is!

I must say that Jacob has been amazing all week long though. Tuesday we spent the day just doing laundry and I went and did a bit more shopping. I had a meeting in the morning and it took 3 hours to get it done. Other than that I didnt do to much. Tuesday night my mom and Shannon came to watch Jacob for me as it was Alyssas Christmas concert at Northview church for her school. THis was the first time that the scchool got together in one big place to do something for the parents. Im also glad that it was in our church. Alyssa school had every class perform either poetry for the audience or sing songs or do a play. Alyssa is alos in choir so she got to perform 4 times. I got to videotape the whole thing. It meant so much to her fo rme to be there. I loved being there for her too. Jacob was on his pappy the whole time. I usually have him on it so I know he hopefully wont get into any trouble. So far it has worked out great that way. They said Jacob was an angel and was being very vocal.

Wednesday I felt great as did Jacob as we had a great nights sleep. He was snoring again! I love it when hes in a deep sleep. He always snores lol. Kinda like someone new I know!!! LOL

Jacob has been drooling up a storm lately. I noticed in his mouth that his teeth are all mixed up. He may need most of them pulled eventually. I gotta see if a dentist will make a home visit first. He seems to have two ridges or rims on his top teeth. Like two rows of teeth are going to be coming in? And his two bottom teeth are being pushed right forward because his new tooth beside them is coming in right behind it and pushing it forward. And he has a huge lump in the bottom of his gums at the front of his mouth??? I think that may also be a tooth? Not sure thats why I want a dentist to look at them. A few SMA kids have needed teeth pulled so Im hoping that this isnt the case.

Scott came Wednesday night late. I was already asleep with my angel. NIce surprise though.

Jacob was fussy throughout the night and I had a headache which is rare for me. I almost wanted to throw up it was so bad. But in the morning it was better. Jacob had a few scares again a few times this week. He has been choking on some of his secreations. Also they have been really thick again. I think he got sick Wednesday night before bed. He seemed to have. There was a whole bunch of frothy white foamy water beside him. He choked and I needed to cough him and get him stable again. It was scary and he had a fever of 102. But now he seems fine. He drooled alot of that frothy stuff but seems ok?
Not sure what that is?

Yesterday we had another good day. Me and Scott went out and did some shopping for Christmas again. He bought an awsome gift for alyssa. She is going to LOVE it....me too. I cant write what it is yet as she might read this. Its HUGE and she was looking at it this am. Took a whole roll of paper to wrap it! Then she ripped it and we had to erwrap it. I hope she didnt see what it was. She said sshe didnt.

I love Christmas soo much this year. I see some of you ahve gotten your Christmas cards. Good I was hopign that you got them by now.

Tonight I might be going to Scotts Christmas work paryt. Then to his moms to meet his family! Yeah can you say nervous. Im going to get my hair done this morning at 11. Then gotta get ready and get everything ready for Jacob today. Scott will have to entertain himself in the mall for a bit!!! Im sure he can!
Tiffany is going to come and watch him for us. I feel totally confident in leaving him with her. I love her to death and know she can handle Jaocb. We will be coming back home tonight also. You know.......this is the first time I have ever been totally away from Jacob. Ive been out and about before...but Ive never been in a totallly different town??? Pray I can do it! lol lol

Have a good weekend. Ill update soon.
Check out the new photos in Jacob photo link on this site. I added a pic of my boys and Jacob sitting up in his bean bag chari.. The link is at the bottom of this page or at the top...in this site.
And check out his new photo website at Jacobs website

Love Angela....

PLEASE GO TO THE PROFESSIONAL PHOTO WEBPAGE HERE Click here then go to professional photos page THERE IS THE NEW PHOTOS THAT STACY FROM FRIENDS OF ALLIE MADE FOR ME AND THE KIDS AT THE BOTTOM OF THE PAGE! CHECK THEM OUT THEY ARE AWSOME!

Monday, December 13, 2004 10:45 PM

I added all Jacobs professional photos on his new photo webpage. Click professional photos here!

How was your weekend? Ours was pretty busy! Lots happened!

Friday night...geesh I cant remember Friday night? I think Jacob slept good? Yah he did he slept all night! Saturday I had to get on of the other mothers from Alyssas dance class to take her for me as mom and dad were waiting for their furniture to be delivered. Finally their family room is going to be finished. Mom is aching from head to toe with all the wallpapering and fixing the floors she has had to do> I wish I could have helped a bit!

Alyssa got home about 10 am and then got ready for my brothers Christmas party. They all got to go to the movies and she got a CD. After that Shannon took her to Toronto to her families Christmas party. So Alyssa had a busy day.

Tiffany got her around noon. She was sooo happy to see Jacob. As was Jacob to see her. He just lights up when he sees her. She brought a beautiful angel bear for him from her personal trainer! Awsome! We spent the day finishing most of the Christmas cards to send out. Then about 5 Scott and Kyle got here. Me and Tiffany put Jacob up in his bean bag Bob the Builder chair. He looked sooo awsome sitting up again. LOL Just hanging out watching TV. All smiles of course. I tried to take a pic but every single battery that I had for my digital camera were dead so I have to get some tomorrow I forgot to today. Oh yah on Friday I had Jacob laying on his tummy for about 20 minutes!!! If your new to this site...last summer me and Tiffany tried a tummy time with him and we almost lost him from a choking episode and major crash when we turned him back on his back. So I was scared to do it, especially when I was alone. But on my chat some of the moms were talking about the importance of tummy time and I wanted to try it again. He did awsome. He was moaning when I was rubbing his back. Loved it!!! Its hard to position such a big guy, he has no resistance, picture a newborn baby but bigger and with less help. No control at all. But he loved it so I want to try that a few times a week at least.

Me and Scott and Kyle went and rented my favorite of all time Christmas movie to watch Saturday night. Have youever seen A Christmas Story?? It is the Best all time Christmas movie ever. I laugh every time I see it. I love, absolutely love that movie! I think they enjoyed it too!

Tiffany left about 8 I think and made it home ok. I made her phone me. We wanted her to stay because of the weather but she thougth shed be fine. Oh and Scott only lives about 1.5 hours away not 2.5...lol sorry!

Saturday I also got an email and phone call from one of the friends of ALlies members, Stacy. SHe wanted to know if she could get some of the members to chip in and get him a new DVD player. I thought that was amazing. They dont even know Jacob and wanted to help him get another one! She said she read his update about 11 PM and was up till 2 thinking of how to help get him another one! I was in tears thinking of how amazing all these wonderful people are that love Jacob and follow his journey! Thanks sooo much. Jacobs dad ended up getting him one and dropped it off on Sunday for him! So I emailed her and phoned her back to thank her and the others who were willing to do that for Jacob. Such an amazing jesture! Thanks everyone at friends of Allies that was going ot help baby bear!

You should have seen Jacobs eyes light up when he saw the Player! He was soooo happy . We couldnt get it set up fast enough for him! Lol he was yelling to get it on! I just love when we can make him happy. I love seeing him smile. If he loves his movies well so be it... he can watch as many as he wants to. Until we get him his computer and the rehab center feels he is old enough to learn and use the switches and stuff well I guess movies is what he gets for now. I wont even get started right now about my feelings on a 1 year old playing and learning... Like hes too young sheesh!!!

Alyssa ended up coming home about 1130 PM saturday night. She was soo tired she flopped on the couch and just crashed. lol Good thing because Kyle was in her room. I just shared the couch with her and Jacob. It was nice to have us all sleeping together. We got up and Scott got us coffee. I made bacon and eggs and the weather was getting bad again so they decided to leave just after lunch.

Sunday Jacobs Aunt Kara came to visit also. He loves his visitors. We had just a relaxing Sunday. Didnt do much. Im so behind in my cleaning and laundry and stuff. Ill get to it. I had a busy morning today also. I got Jacob up about 715 today so he would go to bed early tonight! Then got alyssa off to school, my nurse got here so I went and got us coffee. I came home and finished the last of the Christmas cards, then had a shower, did the dishes, went and mailed the cards and a few packages. So be on the lookout for your cards! I hope they get to everyone in time~ Then did a bit more shopping. I got home and mom and dad were here.

As soon as dad started talking I knew something was wrong. They have an 11 year old yellow lab named buddy. Some of you will remember the pics of Jacob and him at moms outside on the swing. Well he has been sick lately. Peeing the bed at night and his hips are getting sore. Prone for labs. Anyway dad said he wouldnt go outside before they left. It took alot of coaxing to get him up and about. Then they called him in so they could leave and they couldnt find Buddy. Dad went outside to look for him and he was laying in the snow, wouldnt/couldnt get up... After a bit finally he did. They even tried a biscuit and he LOVES food and for him to not get up...thats not good. Buddy has had lumps all through him ever since he was a puppy about 1 year old. Now he is FULL of large huge lumps all over him. Some are the size of tennis balls or larger. All under his fur. Most of his siblings passed away years ago from Cancer. Please pray for Buddy. My moms dog is like another child to her. To us all. He is the most beautiful dog. My parents are really upset over this. I feel so awful for them to have to make some hard decisions over the holidays. Poor Buddy. Thanks

Jacob is asleep he went to bed about 9:30!!! I hope he sleeps all night. Im gonna go to bed early to catch up soon too.

Have a great week. Ill keep you updated about Buddy!

Love Angela
PS Stacy also made awsome pictures for the kids. Ill post them soon on this page and his other page!!! Thanks Stacy, I love themand they turned out great!

Friday, December 10, 2004 9:10 PM

Here is 2 new photos from this AM Saturday Dec 11th 11:15 Baby Bear all wrapped up and cuddly smelling so good! See what he does with his hands... I could watch him play with his fingers all day. He had done that with his hands since birth! I love it it is sooo sweet!

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How is everyone doing in this winter storm? Are you all getting hit like we are? I hope not. We got lots of freezing rain over the last few days. Also rain, and now we are getting snow. So far its only a few centimeters. But we are going to get about 10-15 when its all said and done. Makes for awful driving.

Have you all got your shopping done? I actually am finally almost finished! I usually am one of those shoppers out on Christmas eve. Not because Ive left it but because I just cant finish. I like to spoil the ones I love. So Ill never be done till the stores are closed or the bank account says empty ;) Its getting there already! lol

Jacob has had a weird couple of days... I mean, he has needed lots of extra suctioning and coughing. Im not sure if it is just his teeth coming in or not. I PRAY its not something brewing again. Oh I hope not. I really really really wanna be home for the holidays. His 02 has been lower and his heart higher. Also he is fussy and still not sleeping well. He crashed pretty bad on me last night his heart was at 60 and his 02 at 40. Took a bit to stablize him again. Then he was ok. Still scary everytime that happens. His nurse has let me have a nap yesterday and today. I needed it. I have been sooo tired lately.

Jacob has been crying for his DVD player all day every day. I tell him Im sorry that its broken but he doesnt care. When he is used to something and its his routine then he gets upset and he loved it so much. His little eyes strain to see the TV from the couch and from the floor he has to look up to it and it also hurts his eyes. I cant win. The DVD was much easier for him. I hope we can get him one again soon.

Im working on his diet with the SMA nutritionist trying to figure out a way to get him to gain some of his weight back. He looks so skinny now. I know its just his deterioration and muscle breakdown and loss but man hes just skin and bones now. No more chubby bear. I need to find out either if his jejunem can handle more baby food and the tubing without getting blocked...we dont want that. Or if his intestines can handle more volume then 52 mls per hour??? And if he cant do any of those then I need to see if I can get tolorex prescribed for him along with vivonex as tolorex has more calories. So he would get 1 pack of vivonex and 1 pack of tolorex. Oh someone asked me what he eats..here is his diet
2 packs vivonex
24 ozs distilled spring water
8 ozs juice, white grape, or apple, or pear
2 ozs baby food (fruit)
2 ozs baby food (veggie)
.5 mls liquid calcium
tsp primacidolphous
.5 mls poly vitamins
10 drops echinesia (3 weeks on 1 week off)
250 mg of L-Glutimine
I mix it all in a blender daily and he gets fed 52 mls per hour for 24 hours.

Today Jacob was again fussy. He hasnt had a poop today so Im hoping he will go soon before bed.

Me and Alyssa made the gingerbread house today. She loved decorating it. Cant say its a masterpiece or anything but its ok!!!

Tomorrow nurse Tiffany is coming down and I cant wait to see her. Its been a few weeks. Also Scott and Kyle are sopossed to be. I told him not to with the weather and all but again he chooses to make me worry more! I love to see him but with winter coming Im gonna be worring about him and the weather. He lives about 2.5 hours away so its a pretty far drive for him but he insists he wants to come!

OMG guess what else also. Scott has Kyle for Christmas this year and he plans to spend it here with us. WOW eh! What a sweetheart. He wants to come here and share it with us. I think thats just amazing. Nothing set in stone yet but wow I'm excited.

Oh hey, check out Jacobs new photo website!!! ITs under construction alot of the time as Im working on it alot. Its gonna have all his photos from birth till now, all his news articles, Christmas 2004 pictures, professional photos, poems page and info links for SMA!!! Its taking a long time to find graphics and stuff and learn how to make the webpages and stuff but I have some help and Laura from SMA support and our-sma-angels is helping me!

Here is the link for his new WEBSITE!!!!!!!
Jacobs new website, check it out
Also the links are above this journal and below it too!
Right beside the Wiggles logo!

Stay safe everyone!
PS the xmas cards are ALMOST finished...I know I have been putting them off. I only have 40 more to do. I did about 100 so far! SO watch for them Next week!
Angela

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Sat AM Dec 11th added two new photos of baby bear this am higher!
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Wednesday, December 8, 2004 11:16 PM

Im sorry I couldnt get around earlier to do an update. Man Im just so busy anymore. Well it seems that way anyway!!!

We have had a great weekend and week so far! Had a slow weekend (I think lol) I cant even remember what all we did? Oh I know Saturday Alyssa had her friend here all day and she stayed the night! Kept her busy and outa my hair. Me and Jacob sat around and played and didnt do much of anythign I dont think? Jacob is not sleeping well anymore :( He is staying up till 1-2 and waking through the night many times and getting up about 8-9 then having a 2 hour nap then back to bed at 1-2.... I dont seem to be getting much mommie time anymore. For me thats not enough sleep for him I think. I would like him to sleep more and be more rested. I think hes overtired at night and thats why it takes me from about 9 until 1-2 to get him to sleep. I just dont feel like I have any mom time now... Im trying not to complain cause I love to cuddle him but Im getting a little tired lately and stressed with the holiday stuff and then Jan 9th is gonna be a hard day! 1 year since diagnosis. Anyway I changed his routine -- well Im trying to anyway. Im trying to get him to bed 9 PM then waking him at 7-8 and only letting him sleep about 1 hour then maybe hed be more tired in the PM??? I hope this works. So far no such luck.

Scott came Sunday night but unfortunately he missed the Santa visit! He was bummed about that but tried to get here in time. Jacob loved Santa. He just smiled and was in awe of him. Totally made our day. SUch a special memory to have. He waved to him and talked to him. Santa even got to hold him. Thats one lucky Santa as he hasnt been able to be held much lately, hes been choking too much but he did great with Santa. Santa spoiled all of us. Alyssa was happy to see him. She said she knew he wasnt real but was one of his helpers!!! At that inbetween age not sure what to believe! I hope she still does. Such a sad thing when they give up their childhood dreams. Jacob didnt want to see Santa leave but waved bye to him and smiled. He still smiles from ear to ear when he sees the pics. I show him alot. He TOTALLY loves the rocking reindeer! Its sooo cool and such a neat song he sings. Thanks so much for helping to make our Christmas special Kim. (Is Santa your hubby???) Mom thinks she is sure she knows him but cant place the eyes!!! lol

Monday Jacob had a good day. Me and Scott got out and about and I dragged him around to the mall and did some shopping, and banking and stuff. He didnt mind ( dont think) Unfortunately Jacobs DVD player got broken over the last few days. The screen either was stepped on or dropped? Not sure? I had to take it back and maybe his dad is going to be getting him a new one tomorrow! I hope so. Jacobs poor eyes were bright red tonight from the light and looking up to the TV from the floor (cant see it from the couch) He cried for it but its broken.

Jacobs Nanny Cheryl and her friend Norma came to visit last night. It was a nice visit and brought some decorations for the tree and Jacob got Elmo with the flower that sings to him, also a piano that dances with little animals on them and alyssa got some barbies and markers! It was a nice visit.
Also yesterday Jacobs dad came to visit and my Aunt Sandy! Jacob loves the little ornaments too! THanks
Tonight Jacobs Papa Bruce and Dale came to visit and his dad again!

Scott left about 3 Pm Tuesday in ROTTEN weather. Just had tomake me worry more! He made it home safe and sound though. LOL To a furnace that didnt work! Fixed now though.

Mom came up tonight. They are SOOO busy with decorating the family room and wallpapering and getting it done for Christmas. Im ALMOST done my shopping!!! Im soooo happy about that! Almost done the Christmas cards too so Im hoping they will be in the mail soon.

Hum cant think of anything else right now! Hope your allwell. We are doing great! Trying to figure out a new diet for Jacob to get some meat back on him. He has been drooling way too much again tonight and needing alot of suctioning. Im PRAYING he is not getting something. Im trying to keep him OUT of the hospital for the holidays. I would totally be happy with a healthy Holiday season. Im praying for that.

Hugs to everyone!
Angela

Tuesday, December 7, 2004 1:10 AM

I am sooo sooo sorry that I havent updated all weekend. Now tonight I coulndt even get into the website??? None of the Caring bridge sites were up? Anyway Ill update in the morning. Be prepared its gonna be a long one! ALL good too! Im just too tired tonight. Sending out 100 xmas cards has caused my hand to cramp! Not the same as typing is it :)
I promise an update AND pictures with Santa is coming tomorrow! Here is a quick tease to get you through! Ugh sorry I cant even load the pictures now??? Anyway tomorrow if my comp works an update is coming! Sorry really I am!

Opps I lied it did work! Here is a few

Angela

Friday, December 3, 2004 7:10 PM

Sorry about how big the new pictures are. I took a few of the kids last night and of our Christmas tree. Ill take um off in a day or two as it makes it hard to read the journal entries scrolling back and forth! Sorry.

Ok Tuesday Jacob had a good day. He was of course happy and played most of the day. We havent had a scare all week now. Thats pretty amazing.

Scott came over Wednesday and left Thursday. All day Wednesday Jacob did great. Just full of smiles from ear to ear. I have been testing Jacob all week taking him off pappy the last two days for longer and longer. Well yesterday and today he was off pappy except for naps! Can you believe it? I feel like saying to certain you know whos who said that he would possibly die should pappy come off. Well again Jacob never ceases to amaze me! Im sooooo proud of him. What an angel.

I have had nursing full time this week so I was able to catch up on the cleaning and getting laundry and stuff done. Nope Carol no shopping yet! I have only a few presents bought!!! I know I gotta get working on that. I guess next week will be the crunch. I have nursing again next week so Ill try then! Your so funny girl! Love yah sooo much oh and I must tell you Jacob is sooo in love with his book "God gave us you" He loves it being read to him! Thanks

I think Santa is making a special appearance on Sunday for Jacob!!! What a special little boy to have Santa come to your house! LOL I cant wait to see his face. Wonder if he will freak out! MOM this big red hairy guy is coming to see me!!! LOL

OK OK OK...you all keep asking what is on our Wish list. I wish that you all would just maybe send a card instead...really they are fine and dont need anything! But since I know you all wont accept that as an answer!!! Ok Alyssa is a typical 7 year old girl. Into music, books, hair stuff, makeup! Pleasse no!!! She listens to anythign on the radio! More up to date with music then I am. Likes JOJO, Jessica Simpson, Avril Lavine, Brittany Spears, Hillary Duff, so on and so on. She likes polly pockets, Bratz, Barbies....if you cant tell she is right beside me spilling off all the things she likes ;)!
Jacob likes small toys, I want to get him small dinki cars...I dont know what they are called they are lighter and smaller then the typical ones? He loves things that are animated and we can make dance and light up and sing for him. He loves books and movies. I am trying to get him into Elmo and Mickey and things like that. But likes Bob the Builder , The Wiggles of course, The boo bahs, Bearinstein Bears, Max and Ruby...so on and so on. Anything on treehousetv .com! LOL

I HONESTLY dont need or want anything. I am asking for things from all of you now! I would like to send out Xmas cards I am making on the computer. I need you to send me your addresses whoever would like a Christmas card from us. Send me your addy to my email address angela.trick@gmail.com I would love to send you all something from us now! I have most of the Bears who Care addresses from all the mail. I have kept most of the envelopes to some day send out thankyous if I ever get the chance to.

Also if you are looking for Christmas presents to give out. I have a small favor. For anyone who likes to cook and would like to support a good cause. My friend Doddie lost her daughter Christina to SMA type 1 at 10 months of age. Christinas website This is her website. Well her mom Doddie put together a cookbook from all of us submitting recipies and she got it published. It has info on SMA in it too and our childrens info also. They are done and I just ordered 4 to give out for presents as Jacobs info is in it too. So here is the info you need if you would like to help out a good cause and get great recipies. The title of the book is called Meals from Angels and you can see it here at this link!!! Cookbook
Current Fundraisers
Purchase a Cookbook for SMA Awareness

We are in the process of completing our cookbook for
Christina. We originally came up with the fundraiser to
help offset the cost of her medical machines. When she
earned her wings we changed gears and decided to use the
cookbook as a way to remember her and promote awareness of
SMA. We are expecting this cookbook to be ready to be
delivered by the end of November. The proceeds will be
split 50/50 with SMA Support and Christina Slack SMA Fund.

For more information on SMA Support go to SMA supportand for more information on Christina go to Christinas website and read her journal.

Cost: $20 per book
Shipping: $5 per book

Checks or money orders: Payable to Doddie J. Slack
address to send to: P.O. Box 104, Clendenin, WV 25045
Or you can paypall her at dslack@charter.net

We will have only 200 books to sell so pre-purchase your copy today to ensure you have a copy. (Now she only has 69 left!!!)

THANK YOU, Christina�s Family

Thats it for now! Im hoping to have a slow weekend and thats about it. ALyssa will be going to the Christmas parade tomorrow night if I can find someone to take her. Its toooo cold for my mom to I wont let her.
Thanks for coming to check on us and sorry about the photos Ill delete them tomorrow sometime!
Angela and baby bear

Tuesday, November 30, 2004 12:00 PM

I ADDED JACOBS HOSPITAL PICTURES ABOVE...CHECK OUT AS I DONT KNOW HOW LONG THEY WILL BE THERE!!!!! Also a poem Scott wrote for Jacob

Jacob slept great on Sunday night. Such a little sweety. I was having a bad night and stayed on the computer wayyy too long Sun night. So yesterday I was pretty tired.

The newspaper came about 4:30 to do an update on Jacob. I have attached the clipping in our photo link below. Please if you want to see it you can click on it. They made a few mistakes but so many people follow him through the paper because he has beeen in it sooo many times now. So they did an update on him. It was pretty good.

Also in there is our tribute to Sweet sweet cole. You can see all the pictures of our SMA angels honoring him at this link...such a special boy who touched so many lives... Coles page Please visit it and see how many angels were touched by Cole. Jacob is there too! I am still heartbroken for Kristin. I cant imagine what she and Dan are going through.

Also below that picture is a surprise for most of you curious ladies...lol There is a good picture of Scott and his cute son Kyle. He is 10. I really like this picture of the two of them they almost look like twins!

Also later today sometime if I can find a minute Ill upload some new pictures to a new photobucket album so you can see his latest hospital pictures. Im hoping that I can do that sometime today but Ihave to scan them first...

Jacob has had a great day. He still is pooping a little too much for my liking but Id rather it be coming out then staying inside. I think his urine retention is finally resolved. He is peeing great.

Mom and dad came up yesterday to stay with our nurse so I could go out and get some banking and stuff done. I wanted to get some presents but only ended up getting some more movies for Jacob and soem more xmas decorations...lol Didnt get anything yet again. I just walk around in a daze and just cant even think about what to get who or who would like what??? Im just gonna get everyone to tell me what they want and then go out and get them.. I just dont have the capability of thinking straight anymore. Let alone knowing what anyone likes anymore!!! I never see anyone or do or talk about anything else other then my kids or SMA!!! Maybe Ill just scan picts of Jacob and hand them out! Everyone would like that eh!!!

Anyway Jacob is doing excellent and was off his pappy this morning for about 2 hours. My bi-pap prince has a pretty indented face but loves his pappy. I jsut dont want to push him but he has been on the pappy for almost a week straight now. I think its ok to give him small tests to see if he really is bi-pap- vent dependent. I think hes doing so much better.

Well look for more pics of baby bear soon k.
Hugs and kisses.
Angela and baby bear

I ADDED PICTURES OF JACOB IN THE HOSPITAL CHECK THEM OUT NOW~~~ I DONT KNOW HOW LONG THE WILL BE THERE! :) Also a poem Scott wrote for Jacob

Sunday, November 28, 2004 244 PM

WOW Sorry for not updating in a few days. Its been pretty busy here since we came home!

Friday was a pretty stressful day for everyone. That meeting that we were sopossed to have at 430 on Thurs got cancelled because I didnt have any family there to be in the meeting with me. So they rescheduled it for 10 AM Fri. I still didnt have anyone who could comme for it so they wanted me to stay and have it Mon. I was upset about that and said what is so frigging important about this meeting that I needed to have it anyway. They went ahead and we got to have it at about 11- 1130. I see now why they wanted me to have family there. They were basically saying (doctors, bi-pap team, social workers and nurses, and nurse chest team) that they feel Jacob doesnt have much time left and that he is now bi-pap dependant and becauwe he is on bi-pap and it is not a stable airway that if his pappy came off that he would die. Also that they didnt know what I would do should Jacob take a turn for the worse. They feel its too much for me to be his doctor, nurse and mother and a heavy burden to carry being responsible to decide what to do. They wanted to know what I would do if Jacob should crash. They wanted to know that I would start drugs, (morphine and atavan) should he need it and start palliative care. If that happened and there was nothing I could do of course I would make sure he was comfortable. I would never let him suffer. They just needed to know that I would be ok to make those decisions. And they wondered if I would stay till he either died or became more stable. They dont know if his left lung will ever fully reinflate. They asked me if I was ready for him to die. If I was prepared??? WHAT??? Am I prepared...I said... Well if you asking if Im prepared with like funeral arrangements? Well yes I have walked through a cemetary and picked out a resting place, picked out his tomb stone, picked out his coffin, asked the church to hold his services, talked to the funeral directers, so that way...yes Im prepared...but if your asking if emotionally if Im ready for my son to die? NO Ill never be ready...who would be ready for their child to die? How the hell could they even ask me something like that. UGHHHHHH

Anyway that meeting completely sucked. But also they wanted to know that I would not reintubate Jacob if he crashed? I couldnt tell them that I wouldnt. How could I? They said that it would be cruel? And a vicious circle if I did it over an dover again. ANd that they would never do that to their child? Well I said "so you think that I was cruel to intubate Jacob?" I think it was the right choice and I have gained more 'quality' time with Jacob. They said that there willbe a time he could not be extubated and it wasnt right to do it over an dover again. Well I said duhhh we already talked about this and we decided that if he couldtn be extubated and WAS vent dependant that I could take him home intubated to be extubated at home with family there. They just think that he has no time left and is not happy....THEY ARE WRONG. Jacob is doing well and so happy to be home.

We waited till 330 for an ambulance to pick us up Fri to take us home. It endedup being a transport ambulance and had no equipment. So a nurse from HSC came with us and brought all the hospitals machines just in case we needed them on the way home. Traffic was horrible and it ended up being a 3 hour ride home. We had to take himoff pappy to get into the house and then once inside he ckoked a bit and I suctioned him and a huge plug got stuck onteh end of the csthater...that scared me...cause thats what sick kids told me that would take his life. Thank heavens we got that out before it got too big?? UGH... He was pretty darn happy to be home. Mom and alyssa were here to greet us. Mom stayed the night to take alyssa to dance sat morning and make sure we were alright. Alyssa went to dance then went to see Santa and man oh man did she get spoiled! They took awsome pictures of her and santa and gave her presents and also the nicest picture frames. the bigger one has lights and is just beautiful! Thanks so much Santa and your little helpers ! :)

All day yesterday Jacob did great. He loved absolutely loved having his bath. LOL He has been talking away and playing. A little on the spoiled side having me at his bedside well in bed with him for 9 days straight! But thats ok. He slept all night Fri night and Sat night! What a little angel. Easier to sleep without all the inturuptions. Overall Jacob is doing amazing. I cant thank all of you enough for all the prayers and support you have given us over this last illness. What a scary time it was!

Sat Scott and Kyle came down for the weekend. They kids all got along great (Alyssa bugged Kyle a bit! Think she may have a crush! Oh no!!!) but over all they all get along great. We decorated my tree last night. Scott and I were pretty impressed with Kyle helping with the tree b/c last year he wouldnt help Scott! LOL Jacob loves looking at the tree. I took some pics with the digital camera but unfortunately I cant upload them for some reason. SO tomorrow I will take it to Wallmart and see if they can print them for me and Ill scan them to the photo link at the bottom! I have one of Scott and Kyle just for all of you;)

Also Jacobs dad Jody and his sister Kara came to visit us on Sat. Jacob was happy to see his dad. I even more happy that Scott and Jody have been getting along great. They met in the hospital and have talked and are keeping things civil. I couldnt be happier about the whole situation. Thanks guys for making a tough situation comfortable as it isnt easy for anyone.
My brother came up to see Jacob yesterday also with my parents. So it has been an extreamly busy weekend to say the least. Im just glad to have the xmas decorations up and they house seems so much more cosier this way!

Again thanks for being here for me during this stressful and trying time. I sure do have a fighter on my hands and he is again and again proving everyone wrong and beating the odds. Im sooo proud of him and love him with all my heart. I feel so special and priviledged to be his mother. What an honor.

Love and prayers
Angela

PS Angel Jenn...YES YES YES Sorry I thought I metnioned that I did get the grouchy bear in one of my journals. I guess you didnt see it.> Ill email you today. It is the most beautiful gunt bear. Huge and Jacob loves stuff that soft. He rubs him and loves him sooo much. I have a picture of him with him Ill send it to you.
Thanks

Thursday, November 25, 2004 100PM

Well Jacob is doing FABULOUS!!!

Hes sleeping like a little bi-pap prince right now. Lastnight was really scary at times. He had one major desat and they were going to reintubate him... I pleaded with them to let me cough him more a few more times and sure enough I got junk out and he did much better. They needed to bag him with 02 for a bit but he is better. We had to up his bi-pap pressures to 24/7.5 for a bit and they weaned him down through the night. Right after of course his smile was huge letting me know he is ok...

His b/u rate has been lowered to 20 breaths per minute from 30 as his blood gas showed he is over ventilated. I am waiting for a meeting between now and 4 pm with they said 400 doctors? I hope she was exagerating... They want to discuss discharge and the plans at home with me. They were watiing to see if I had company coming to be in the room with me but its just me today so Ill stick it out. Ive been there before and I can handle them:)

They were wanting to discharge us this morning as of yesterday as in CCU he is no longer under that team once extubated and there is no rooms up on the 7th floor where we would go..so they basically want to send us home. But because of his complications last night they kept us here. He is still not peeing on his own and still receiving lasix to help him pee. So once he is off that and he is feeding full feeds and tolorating that we go home. THey said maybe tomorrow morning??? I dont really know anything right now.

Today OMG he is soooooooooooo happy and smiling and playing. Talking away and saying baba baba baba I have no idea what he is trying ot tell me but he smiles and laughs when I repeat it. So whatever it is he is happy and enjoying hearing his husky little voice again. I hope that his voice comes back soon...if not I honestly do love the little husk to it!

Last night after Tiffany was done her shift she got me to leave the room and another mom that Ive met being here. and Her daughter is here and has been here for a lONG time ordered me some pasta! Thanks Deb it was delicious. I loved it. She is just such an amazing mom and we share so many laughs together.

Tiff is working today and on her lunch break she wants to come releive me and let me go eat so I know atleast Ill get one meal in today! Tiff thanks your awsome.

Ill update as soon as I can. Thanks for all the prayers and support and love. Your all amazing. You keep saying I am but without all of you I would feel lost and alone. Its easy to care for one of Gods angels and its easier to know that all of you are helping in your own way.

Happy Thanksgiving to all our Anerican friends. Hope you all have a blessed weekend and enjoy your families and kiss hug and love your children!!!

Love and kisses
Angela and baby bear!

Wednesday, November 24, 2004 140 PM

JACOB IS EXTUBATED!!!!!!!!!!

He did so well. They decided at 11 AM that he should do well if they tried. They had all sorts of people there and said "WHEN" he fails you have to leave the rooom and we will reintubate. LOL I knew he would do well> His spirit and strength, and fight amaze me everyday> Right now he is smiling and laughing...a little rough as with that tube down his throat for so long his vocal cords are a little rough. He is doing so well though. I cant believe it.... yes I can! He is and has fought for so long I just knew looking at him he was ready. I showed him his pappy and siad are you ready? He smiled and nodded his head yes. I took that as an ok to try. I thought Id give Sick Kids their shot at it. He did so well> Instantly we suctioned him and put the pappy on and his heart lowered and 02 is stable at 99% and his chest sounds great! He is stil lnot out of the woods but getting tere. Im gonna have him home for Christmas and decorate that tree thats been sitting waiting for me to for weeks! Kim tell Santa to get all geared up and Jacob will be expecting a visit from him soon!!!

Can you believe how amazing he is. I am sooooooooo PROUD to call him my son. My angel...my baby bear. The nurses come and check on him (the ones who have looked after him) and cant believe how awsome a spirit he has. ALWAYS has a smile on his face.

My mom and SHannon just got here and mom was crying tears of joy to know he did ok and everything went well. He is so happy to see them. Jacobs dad was here for the extubation with me. Tiffany stopped by to see him right after too> And of course precious Madaline...your awsome girl thatnks for everything.

EVERYONE thanks for all the love, prayers and support. As I usually say I cant believe how awsome you all are and how supportive you are all of my angel. THANKS

LOve and prayers
Ange

Tuesday, November 23, 2004 2:20 PM

Hello everyone...thanks so much for all the prayers from teh bottom of my heart.

I cant stress enough how badly Jacob needs prayers right now. I thought he was getting better but as of right now he is now so well> Having a few setbacks to say the least. I wasnt allowed to sleep in the room with him last night. They give me a pager and when he wakes up they page me and I can go back to him. He slept all night last night. I finally also got a pretty good sleep. Poor Scott doesnt sleep well here either and has to go home for about a week. SO he will be worried but will be ok!
Jacobs dad came here bright and early this morning thinking that the extubation was going ot be taking place. Also Tiffany came too. When Jacob woke up he was really wet and junky in his lungs. Needing almost constant suctioning and failing all the little tests they do to trial the extubation. He is not peeing again so they have him on lasix. To make him pee. Just put in a cathater to test the urine. They didnt think he would do well with the extubation so they waited I am soooooo happy about that. They are running all sorts of tests right now again to see why his fever is up again adn why he is struggling so bad with his secretions.

They will take it day by day to see what to do with Jacob...

My other family...SMA support family is talking about getting Jacob to New Jersey. I talked with one of the doctors down there today and they want Toronto to try to extubate him once and if he fails and all they want me to transprot him to NewJersey and worry about the billing later? IT may be in the hundreds of thousands??? Not realistic but I would do ANYTHING for my baby, If he shows that he wants to still fight which he is doing now. THey are willing ot do findraising later and worry about all that stuff after the fact. Its alot to think about and decide. What if they can extubate and we get Jacob better and go home then a weke later he needs it all again??? UGh I cant even think about all that stuff now. Just worry about the now right now.

I just want him to get better andif he is willing ot fight and continue on and live and love well then so am I!!! I will fight for him and with him and never ever give up on him unless he showed me or told me or made the decision himself that he is too tired and needs the break adn rest.

Thanks to everyone and I will forever be grateful and remember how much my little angel baby bear made an impact on you all. You all know him and love him so much> I can see it in the entries. It gives me the strength to carry on and continue to fihgt for my angel.
Thanks
Love and hugs
Angela and baby bear
FURTHER UPDATE
Ange asked me to update this further as she forgot a couple of things...she has so much on her mind. Jacob was smiles all day...he had a good blowing kiss session as well. The secretions were much better after 1pm...I think he only had one or two suction sessions until I left around 7pm. It is going to be a killer working the next couple of days and not being there. Jacob and Ange have visitors every day...but I am being selfish as I will miss them both. Sheila and Wayne were up for the afternoon/evening and Tiffany was there for most of the day as well. Tiffany bought Jacob a "Booh Bah"?...and he just loved it...Wayne bought Jacob Frank the Octopus which he loved as well. Man his smile just makes your heart melt...such a special little guy. Between blowing kisses and his blinking game and all of those smiles Jacob had a good day after a rough start...Ange has been eating the past couple of days...I make sure of that much at least...and we tried to get some sleep in the waiting room...everyone remind Ange to get a room at the Delta-Chelsea...a couple of the staff at the hospital reminded her that they have rooms for parents...but she does not like the fact she is not a hop skip and jump away from Jacob. It IS only 1 block directly in front of the hospital though and is about a 2 minuite walk if that. The nurses on CCU are awesome and he is in good hands while she sleeps. Take care all...keep the prayers a coming.

Monday, November 22, 2004 11:16 AM CST

Quick update from me...mommie...ange :)
Ok I dont even know what you all know or have heard or whatever...this is coming from a tired mom ok..

My poor baby had a pretty rough weekend. Im so pissed off that they will not listen to me and care for him properly from the Bach protocol. They will not talk to the US doctors until he FAILS extubation once then they may listen to me and talk to them. Its so sad that he should have to fail and maybe lose his life to get them to listen to me and do the care that I wnat for him. I have to send a HUGE HUGE thankyou to FSMA for sending an advocate to talk to the doctors and head ICU team with me. Louise Smith and Rachel? were here to help represent what I believe in. I dont want jacob to suffer anymore. I want him to be comfortable. They are making him breathe on his own and he is not ready. Even at home when sick he didnt breathe on his own. He was a bi-pap prince. And they feel that he will fail extubation if his secretions are too think and copius like they are...he is teething another 3 teeth... ugh. And when he sleeps he lets the bi-pap breathe for him so I finally got them to meet me half way and increase his back up rate. so when he is sleeping he gets help to breathe...thank heavens. He is so sweaty when they make him try to work so hard to breathe. I cant stand to see him suffer. I just dont know what to do.

Can you believe this...MY SMA SUPPORT FAMILY HAS BEEN SO AWSOME.... I CANT EVEN EXPLAIN HOW AWSOEM THEY ALL ARE.
They have talked about getting Jacob out of here and to another hospital should they not listen to me. They are willing to do anything to help us. Who knows..... what could happen... Should Jacob fail extubation I am taking him out of here... I cant stand to lose him and if he wants to be here and is willing to fight still and is not too tired I will continue to fight for him.

I got them to finally listen to me and got an arterial line put into him so he is not getting pin cushioned anymore. Finally he is not getting stuck anymore...!!!

Jacob sure has been through the ringer. He is ok right now. They just did another xray and there is no change from yesterdays one. They still feel that maybe his left diaphram is paralyzed and will never support his left lung again. He may be extubated and be able to go home on pappy with just a right lung? Not hopeful they say but it might be possible...Jacob has shown us that possible is a huge thing for him to benifit from.

They sent in the palliative care team should something go wrong and jacob cant fight anymore. They said that we could send him home on the intubated and ventilator and be extubated at home with family there...this si not gonna happen but if it came to this then at least I can have a say that he is NOT going to die in this hospital..

Thanks for the prayers
He may be extubated tomorrow or wed so keep up with the prayers
Love Angela and baby jacob

Friday, November 19, 2004 12:24 AM CST

I dont know what ot say
Yesxterday was the hardest day of my life...and Jacobs.
Please pray for him...and thank you to those of you sending prayers and thoughts.

He needs them
He crashed so bad in ER yesterday. I had to decided right tehn and there if he lived or died. I chose to intubate ot give him one more fightening chance. I know that he most likely wont be able to come off the ventilator. But with prayers and peace he may make it.
He is settled and on pain drugs and sedated. Not completely out but able to look at us. He cries a silent cry with tears. He cant talk with the intubation. They couldnt get an IV in peterborough hosp so they went into his bone in his leg 4 times... that hurts him.

He is resting ok... we will try to extubate him in a few days if he fails we will call family in and reintubate until it is time to try again.

His whole left lung is useless...looks better on the vent but realistically they said that his left diaphram is prob shutting down and he wont be able to use that lung anynmore... Pray he has strength to get through this...Im NOT ready to lose him
Mom and dad are here along with Scott...thank heavens for him

Love and prayers

I Have no access to comp so look for updates in the guestbook from shannon
Ange

Thursday, November 18, 2004 5:45 AM

It is with great saddness that I inform you of a dear friends sons passing. Sweet Bongo Boy Cole Webb had SMA type 1. Kristin was the MOST dedicated mother to her son I have ever met. Through the love for Cole, Coles Quilts was started. Cole was a fighter for 27 months. Proving over and over again how strong a fighter he was. I cant and dont know what else to say. I will post a picture of Cole in our photo album. Please look at his new Christmas pictures she just got back today. He is forever a big inspiration to me and will forever remain a part of my life. Kristin I love you and will forever love Bongo Boy... I HATE SMA

Jacob flatlined tonight. About 8 PM after alyssa got home from church. She had to help me again. This time Jacob was sweaty, blue, lifeless, no heartrate and no oxygen going into him. ALyssa was crying so I told her to sit over on the couch. I prayed then...I said to GOD if it is Jacobs time then Im ok with it...if not with this next cough help me help him...And after that cough sure enough Jacob got a heart rate, color started to come back, and he began to cry...
In the AM I dont have a nurse again. Mom is coming to help me take him to the hospital to get a chest xray to see what is exactly going on...if he still has pnemonia and his left lung is collasped...Im going to ask for him to be intubated and give him a rest and the break he deserves. Ill update soon... After I know what is going to happen. I dont know if they will intubate him here at our local hospital and then fly us to Toronto or if we will jsut go to Tornoto and let them see him there first.

Love Angela....

Wednesday, November 17, 2004 5:20 PM

You know that song.... "All I want for Christmas is my two front teeth...my two front teeth" !!! lol... Well If thats what Jacob was wanting for Christmas..well he got half his wish!!! Yup that top right tooth is finally through :) Yeah. And his left one is almost through. Wow my baby finally has 3 teeth now. Its pretty cool because we didnt know if Jacob would be getting his teeth. For some reason SMA kids have trouble with their teeth? But so far hes doing ok in that department. He has 3 pearly whites now! YEAH!!! Funny how excited we get over certain things. He now has his bottom two teeth and that top one.

Again to everyone visiting Jacob thanks so much for all your warm wishes, prayers and wonderful messages. Friends of Allie...you all are amazing. You all keep coming back to check on us and leave the warmest messages. And are becoming a big part of our lives. Thanks so much. Jacob has so many wonderful people that love him and check on him and pray for him...speaking of that little bear!!! I took a few pics on my digital camera. He always closes his eyes with that flash. Its sooo bright. I got a warning from Photobucket again. Man its only been 5 days and already Im gonna be losing the pictures on this website. I promise soon Ill have his birth till now photos uploaded and try to get that website done. Havent even started it yet. I have to learn that program and just havent had the time. Then you all can see him grow and see how much he has changed over this last year. Hes sooo big now. His cousin Justice and aunt Kara were here a few days ago..Fri I think and we got Justice to lay beside Jacob. He is 7 by the way. And Justice is only a head length taller then Jacob. He is almost as tall as a 7 year old?? Can you believe that? Hes sooo tall. What a big boy...

Ok Monday night Jacob was horrible and junky and needing lots of help. I had a nurse and on Tuesday I had one too. He slept ok Monday night. I kept him downstairs I didnt want to bring him up there and have something happen and not be in the environment that Im used to working on him. Well Tues AM he was horrible Really horrible. I was on the phone with Toronto and Ottawa, and some of the SMA moms from my support group talking about intubating Jacob. I just thought that he isnt getting ANY better with all this medicine going into him. And if I do nothing and he just gets weaker and weaker and when he loses that strength then thats his new baseline. He cant gain that strength back. So I was thinking wouldnt it make sense to intubate Jacob, let the machines breathe for him and help him inflate his lungs, (his left is completely collasped) and get over the pnemonia better and faster. Then to just sit and watch him get weaker and suffer more andmore struggling ot breathe. Or we could just let him try to fight it himself risking a plug or him lose his life to it. Also with intubation he could fail extuabation and we lose him trying to extubate him. I have been talking about all the scenarios. I felt that intubation is getting more of an option for Jacob. I wnated to give it a few more days and see how he does. Neither scenerio is good...almost like your dammed if you do and your dammed ifyou dont...

Well yesterday too because Jacob was not well we (me and the nurse) gave him a sponge bath on the floor. He was loving it. Massaged him well and soaked him right up. He loved it. Im sure he was thinking ok mom...this isnt the way you normally do it. LOL Last night Jacob had a pretty bad crash around supper time. Poor Alyssa. I was holding Jacob and we were kinda tangled in his tubes and wires and Im sure he had a plug and I didnt want to move him too much as he was choking and desatting so quickly. I called out to Alyssa to turn on the suction, she was awsome. She held the suction while I held Jacob in my arms and coughed him, we would switch she take the cough mask and hand me the suction. then the bi-pap she turned it all on for me and gave me what I asked for. It took a bit but after a while we stablized him. Her friend was there too and she was saying as she was working to her friend...this is what coughs Jacob because he cant swallow an dhe chokes on his spit...and then this is a suction and it sucks out his spit...and this is his bi-pap it helps him breathe and get a break...she was sayign to her friend...its ok...hes fine he just needs some help for a minute. After he was better and smiling and Alyssa says see...hes ok..just needed some help! What an amazing girl eh. My mom and dad came up right after that happened. Im glad cause I needed a smoke after that. Phew... sometimes my nerves still shake after some of those scares. And more pressure while alyssa is watching.

They stayed for a bit to let me do the dishes and make Jacobs cocktail... and get some stuff done around the house. Then they left and alyssa and Jacob went to bed and I relaxed for a bit. I just watched the tube and read some of a book. It felt good to have both kids in bed early and resting. I went to bed shortly after and lvoed the early rest. I got up twice to do treatments with Jacob last night again.

He did pretty good throught the night last night. This morning when he woke up he looked a bit better. Was really junky but after his nebs and coughing and suctioning and CPT he sounded a bit better. His right is still wet and junky but I could hear some small diminished air going into his left. Thats awsome. The cough assist is doing its job inflating that lung and getting all the junk out. My nurse is sick so I was alone all day which I enjoyed today. I loved just me and him cuddling all morning after alyssa went to school. We did NOTHING today. Just layed around and I did his treatments. He went to bed for a nap about 1 and I layed with him and slept will almost 3... wowo I loved that nap. And now his 02 is staying about 94-97...I cant believe it. Still feverish and hot and junky and not out of the woods yet but wow Im sure that he is on his way to being better....Praise the Lord.

Ill update more tomorrow how he is doing.

Thanks so much for all the prayers. From the power of prayer I believe that it helps Jacob overcome hurdles I dont think he could otherwise. Thanks from my heart.
All my love
Angela

Monday, November 15, 2004 4:30 PM

Well not too much good news to update still yet again.

WOW I cant thank you all enough for coming to check on all of us. It means so much to me. I cant tell you how many times I have sat and cried at my computer reading all those wonderful signings. Thank you all soooooo much. It means the world to me and I look so forward to seeing that support. Thanks

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Saturday evening Jacob started to get even worse. I have never heard him sooo junky. He was struggling with every breath. I just didn't know what to do. SOme other SMA mothers I talk to in my support group thought I should try him on Prendisone. He has had it before last Feb when he was really sick. Mind you he could cough really well then and had movement. So with him being this sick now and not even being able to cough you can tell how scary that is. It almost always goes into his lungs with no defense for his airways. Ugh I cant tell you how much it hurts me to see him so sick. So I called the on call Chest Fellow at the Hospital for Sick Kids to ask about the Prendisone and starting him on it. She really really struggled to try to convince me to bring him into the hospital. I explained my wishes adn told her that the hospital cant do anything that I cant do at home. IF he started to not tolorate his feeds or needed tube changes or I needed bloodwork or something I might take him in. But I told her that I am doing everything and MORE at home for him and even the nurses there dont know him. I would never ever get a break in the hospital. He just does so much better at home. She went on and on saying that she didnt think it was a good idea sending me the script but after long conversations I managed to get it for him. So she sent it in to Shoppers for him and they even delivered it that night for him!!!. Im good eh!~~~~ LOL

So he is on that wonderful miraculous miracle drug. Im praying its what he needed. So Saturday evening he did pretty good. He went to sleep fine to. He has so many treatments and stuff going on all teh time it seems like as soon as you finish one thing you have to start something else with him... NOT complaining by the way! Just worried about him. I know he will get better soon. I got up with him a few times Saturday night and did some treatments with him. He kept waking up and whining and trying to cry. HIs little voice comes and goes. Scratchy.

On Sunday when he woke up wow....he was doing so well. He sounded junky still but his 02 was better and he was happy and doing well. Then when I went to lay him down for his nap everytime he started to go to sleep his 02 would drop into the 80s and he would panick and wake up. This kept happening so he didnt get a nap. Later around supper time he started to spike a fever again (its up and down all day) and was getting flushed and not happy. My brother and Shannon came up to bring me a coffee after supper. It was nice to have a break. I let Shannon give him his neb treatment when she was here so that gave me about a 20 minute break. After they left he was just horrible. Im coughing him almost every 1/2 hour to hour whenever he needs it. We upped his amount of ventilin knowing that it can increase the heart and after awhile you have to monitor his potassium as it may become harmful.

I woke through the night a few times with him last night to give him a few treatments. His monitor kept beeping off. This morning he was ROUGH. Really rough. We needed to bleed 3 liters of oxygen into him. Im not sure if it was a plug or a collapse. But for a few hours he needed lots of oxygen to help him. He needed TONS of coughing and suctioning and CPT and neb treatments and saline treatments. I was so happy that I got to have a nurse today. When he layed down for a nap I did too. We both had a two hour nap this afternoon.

Oh I called his pead today too and we switched his antibiotic to a better one. Hes now on Zithromax and the Prendisone so I hope that he will start to improve with the new meds....

Please continue to keep him in your prayers... Thank you all sooo much and to Friends of Allie...wow you are all so amazing. Thanks for all the messages and emails. Im tyring to get back to them all... Thanks
And to all the Trent/Fleming nursing students.. thanks for keeping up with our journey. I miss you all and someday Ill be back... Tell everyone I said hi and that Im thanking them for the prayers...

Ok now my update. Saturday night Scott came to help me with Jacob. And he brought his son Kyle. What a cutie he is. So helpful and interested in Jacob. Alyssa was at her friends for the weekend so the never got much time to meet. Just before they left Sunday afternoon. What a great kid he is, just like his dad!!! It was a good meeting and I was nervous... but all went well.
Im SICK...yup imagine that. UGH Its pretty hard to stay focused and think straight when it feels like my head is gonna fall off. I am taking vitamins and Tylonal cold and flu to try to kick it. I cant stay sick...no one else to look after little bear!!!

Im sorry for sounding so down in my yesterdays journal. I was just trying to let the newer people visiting Jacob understand my reasonings on a few things. I hope you all do know that each and every minute spent with Jacob is fun, with laughs, smiles, signing, playing, hes so happy even when he is sooo sick. Always has that smile.... I make sure that he knows Im happy. I dont let him see me sad. Its not fair to him to sit and wonder why Im sad when he isnt. You know... Anyway I just wanted you all to know that if Im venting in this journal its because I need somewhere to send it. I have to vent somedays. ANd this feels like the right place to do it.

Ok love and hugs to all...hes calling for his mama...
Hugs and prayers to all the other sick children we follow. My prayers are with you all. Sorry I dont have much time to come and visit... I will soon

Angela

Saturday, November 13, 2004 5 :00 PM

Well Jacob is no better...actually hes worse then when I started all his treatments 3 days ago. Its getting pretty scary. I just pray he can fight this off. He is in pretty good spirits still though.

He slept great last night. I woke up about 3 am to do his nebs and coughing him. Im glad I did because he was even more rough in the AM this morning. I can only imagine how bad he woulda been if I hadnt of woke up to treat him. I know he is much worse because when we woke up (in my bedroom again!!!) I gave him a bath. The ONE thing he LOVES so much. For those of you new to reading his site... Jacob is basically completely paralized now. SMA has taken away almost all of his movement. But in the bath he can manage to move his legs a little. As they are weightless in the water. This is the only time I have ever been able to see him move his legs. And he cried and cried in the tub. I cut it short and just washed him quickly. SO I know he is not well for him to not want his bath.

He just sounds sooo awful. Wheezing now, coughing (trying to cough) each breath is sooo labored. When I listen to his lungs they sound full of fluid. I think he is aspirating his secretions. Or the mucus is settling in his lungs. I cough him almost every half hour withhis cough assist trying to keep it moving and getting it out of there. But with all the Neb treatments bled through his bi-pap with Pulmicort, Salbutamol, also saline treatments too and his antibiotic you would think he would be getting better. I think he has developed pnemonia. Each and every cold could potentially take Jacobs life. Actually I remember last October when we saw the neuroligist and he told me that when Jacob got his first cold last winter it would take his life. He would develop pnemonia and suffocate and drown in his own mucus in his lungs. He has proved that theory wrong. But this is his first cold/flu/pnemonia thats bad this season. Most of his other issues last spring/summer/fall were gj or g tube related or teething. So of course Im on high alert. I worry that this is going to be the one cold that does make Jacob earn his wings. I pray I am totally over reacting and worring like the worry wart I am. But how can you not worry??? Im so not ready to lose my son. He is spiking fevers throughout the day. He used to hate his cough assist. But now he sees it and smiles.

SMA has taken so much from my angel. I am just not ready for the dam SMA to take his life. Please join me in praying that Jacob WILL survive this current health problems. He really isnt getting any better. Hes worse than Ive ever seen him.

If your wondering why I dont take him into the hospital well here is my rashening. This is sopossed to be one of the best and greatest hospitals in the world. Im sure it is for some certain diseases or problems. But this is the one hospital like all the others that is completly uneducated about how to treat SMA. They told me to take Jacob home and love him. TO give him morphine to help him with his pain and give him oxygen when he gets sick and cant breathe. Well most of you know that I had already done my research. As when he was only about a month old I diagnosed him with SMA. It took them till he was 5.5 months old to listen to me and diagnose him with it. So I knew I wanted to use this NIV protocol. Ran by www.doctorbach.com And I knew that giving him morphine and 02 would just quicken his death. Making his breathing slower. And just speed up his death. I wanted these machines to help him breath, cough, eat, swallow, ect. They told me that I would be just prolonging his life for ME???? For me??? Are they kidding??? I know the reality...I know the statistics.. I knew his chances of even seeing his first birthday were almost next to nil. BUT my boy is a fighter. He is an angel and has proved he is not ready to go. Mind you I do have morphine in the back of the fridge in case he took a turn for the worse and needed comfort measures. Im realistic about his condition. But Im not gonna starve my son to death. Im not gonna watch him suffocate to death. If he wanted to go and was ready to go home then he will tell me when hes ready. Im just keeping him comforted. Im just ensureing he is not suffering. Yes Im afraid to lose him. BUt Im not unrealistic that he will more than likely die this winter. This hospital will not intubate SMA kids. In New Jersey they are successful at intubating and extubating SMA children under a different procedure. Here they will not even try it. Here they have a less then 5% success at extubating SMA children. It would help him recover sooo much quicker to be intubated when sick but he could never come off the ventilator here. I dont have the $$s to take him to the states to get the proper care he needs. So it is not an option to help him in the hospital. Only if he needs an IV or a tube change will I take him back to that hospital. Neither of us get any rest. SOme days its 4PM before I can get a drink or something to eat. It just isnt realistic to take him there anymore. I have decided that traching Jacob is not an option. That to me is too invasive and just not an option for Jacob. It would feel like Im prolonging him for me. I have thought long and hard about it and to see Jacob become a quadrapalegic completely unable to move, talk, even maybe blink and be on a ventilator for the rest of his life is just not how I see it fit for Jacob. Please understand my reasoning for this. I feel that if Jacobs heart stops or he completely stops breathing from a mucus plug and I cant do ANYTHING to help him then its his way of telling me he has fought long and hard enough. That hes too tired to fight anymore. I have decided long ago to place an order on Jacob that if his heart stops then no extream measures to bring him back. No chest compressions. He can be intubated once to try to see if he can recouperate if its just his airway. More for family to arrive and say their goodbyes.

This is so hard to write. But its our reality. He may not recover from this cold. He may lose his life to this. Its a real highly possibility. But Im not giving up hope. I have prayer and sooo many wonderful people are praying for my angel. Its not time for Jacob to earn his wings. He would make the most beautiful angel. He is always surrounded by angels. He has since the day he was born. We used to always say what is he looking at. Hed follow things on the ceiling since he was just baby. He still does to this day. We have seen orbs in pictures. He talks to them too. I know he is surrounded by angels.

Please continue to pray for Jacob. He really needs the prayers right now.

All my love and prayers
Hugs and butterfly kisses...
Angela

Thursday, November 11, 2004 1130 AM

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New photos added!!!!! Take a look now I dont know how long they will last!!!
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Fri was sooo busy. I left yesterdays old journal up in case you wanted to read what all we have to do with him. I was completely pooped by the end of the day. There was lots of scary moments and trying times throughout the day and evening yesterday. By the time it was time to put Jacob to bed I was aching from head to toe. Mom came up for a bit to help with Alyssa. She was getting on my nerves bad last night. I know shes probably just worried and stuff but when your stressed out completely you just cant handle everything all at once. Thanks mom. Love you so much.

Guess what... this is AWSOME news!!!

As most of you know ever since Jacob was about 2 months old and started to have breathing difficulties. I didnt ever want to leave his side. Since babies sleep ALOT I always kept him downstairs onthe couch with me. So I didnt have to sleep in a room about 18 hours a day!!! Anyway as the machines keep coming and more and more work needed to be done with Jacobs care we just never ever ended up going back upstairs to sleep. The couch kinda just became our haven. Anyway last night I was hurting so bad I thought what the heck. I took all his machines upstairs. I put his feeding pump on my nightstand, his bi-pap on my dresser and his humidifier, and his 02 monitor and his suction, were all on my dresser. He had the most confused look on his face!!! IT was cute. He went right to sleep. And so did I. I thought Id sleep for a bit with him and then come downstairs and do some stuff on the comp. Well I was so pooped and exhausted I went right to sleep and woke at 5 AM and went right back to sleep. Can you believe it??? I cant tell you how awsome it was to sleep a whole night in my bed. I missed my bed soooo much!!!

Unfortunately because of the long sleep we had I shoulda woke Jacob up to do some CPT and physio, nebbing and ventlin and coughing. But because we slept all night and I didnt get up to do this with Jacob he was REALLY hard (his chest) this morning. He crashed really bad. His 02 was in the low 40s and 30s for a long time. I had our new nurse this morning and she was a big help. After, CPT, physio, neb treatments, pulmicort, ventlin, and coughing and suctioning he was finally stableized. I feel so bad for being so selfish. I shoulda just stayed up at 5 am and did all his treatments. Im setting my alarm tonight and making sure that we get up. How awful of a mommie eh! Sorry just feel bad.

I hope you all like the new pics of Jacob from the last few months. I really love them too. Enjoy... Ill update in the am k. Alyssa is going to her friends dads for the weekend so its just gonna be me and Jacob all weekend. Lookign forward to it actually. With him being SOOO sick its better that way anyway. Poor ALyssa must get sick and tired of hearing "just a minute, hang on...ugh Alyssa Im busy..." I know i get tired of saying it...

Again thanks for all the prayers.
And to friends of Allie. I would really like to know how you found out about us? I love all of your notes and thanks SOOO Much for coming by always to check on Jacob. Who is Allie? Id love to hear all about it. Thanks

Angela

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Please could you say some prayers for Jacob...hes pretty rough right now... And if you could spare one or two for me and Alyssa that would be great too!

Man what a day it has been today. I just wonder how you all get stuff done and take care of the kids when they are sick??? Amazing group of women you all are!

Well Jacob had a bad night Tuesday night...well he slept better but he crashed and had vasal vagals TONS of times. Needing constant suctioning again???
He is teething still that darn top tooth is cut through but has just sat there for about 2 weeks just peering out...not coming down anymore. Well Wednesday morning when I took him off pappy he crashed bad.

Im not sure if it was a vasal vagal cause I was just changing his pants because we had to get his flu/RSV shots Weds. So his 02 monitor wasnt on him at he time. But this first one in the morning took about 10 minutes to stablize him. I needed to cough him about 30 times to get all the crap out. And it wasnt that much just really thick. Well after that he crashed about 15 times in about an hour. He has been on pappy for most of the rest of the day and needed extra cuddles.

Since then he enjoyed watching me put up some xmas
decorations...anyone else doing this? I feel totally weird but hey! Im so darn excited this year for xmas. Last year we were still waiting for our 7 week wait for our results if he had sma or not. We knew but you remember how that LONG 7 week wait was. So needless to say that last years xmas sucked for everyone. I totally wanna make it up to Alyssa this year. I feel so bad about it. Last year I barely even put up decorations. Shannon and Uncle Dan put it up with Alyssa last year for me. I just couldnt get into it.

I have a new tree this year (old one was my parents from 69.) I splirged and got a new one at Canadian Tire! I love it and its gonna look so much better. Yup I spent too much money on stuff but I was running around looking at all the stuff like a kid in a candy store. And I got lots of new decorations. She was so excited to see them all up when she got home. Not the tree but just some of the decortations. Ill take a pic of our new HUGE xmas bear.
I love him and hes so angelic and reminded me of Jaocb (little--baby bear) so I had to get him. He is tall and soft soft white fur with gold embroidery and a coat and just beautiful.

Wow writing a novel again sorry!

Ok well I now know that yesterday AM was a sure sign that something was brewing. He has a full blown old/flu/sick. Lost most of his voice and last night started with a high fever. Through the night I had to reposition him alot and cpt and cough and extra flushes and his 02 kept dropping. High heart rate again. He just wasnt great through the night. I didnt get much sleep again.

I called Toronto Hospital for Sick kids today, they are good with phoning in scripts for us.

Ok here is the 'New' protocol as of today...

Salbutamol every 4 hours, Pulmicort .25 mg/ml 2x a day.
Extra flushes, extra ventolin as needed. They are phoning in amoxacylin also to start today. Shoppers is going to deliver it to us...

Tons of CPT and coughing as needed.

He sounds clearer in the lungs today. Just in the last few hours. But hes still TONS more junky then I would like...
He is trying to cough alot... I never knew he could. Happy to at least see hes a little stronger in the coughing dept. Never used to be able to cough for months.
He is sneezing too and his nose is running. THICK secretions, yellow, junky, just plain old miserable...

His 02 is staying between 90-95 up and down and up and down. Sick kids suggested that only if he stays at 90-93 to supply 02 for small periods just to get him up to 95-96 so not much. And keep checking how he is doing every once in awhile. They said not too much or we might mask his C02 rising.

Its gonna be alot of work again but I feel confident that I can handle this at home again. I just dont feel comfortable taking him in to catch something else. And since they cant intubate him then there really is no reason other then IV and we are in the works to have that at home in the future too if needed. I am really certain that the hospital is going to be the complete last resort from now on. I just feel like I have to make a decision and stick to it. I am choosing with keeping him at home and will live with the outcome of it. I just feel that we can and will get through this again like we always do.

If you could send Jacob some prayers please...he really could use them agian. And maybe one or two for me too!!! ;)
Thanks for understanding.
If you have any suggestions Id be happy to hear from you as Im gonna try to do this all myself from now on.

Thanks Ange
Hugs and butterfly kisses!!!

Update on top!!!
And new pics on top too!!!!

Tuesday, November 9, 2004 5:10 PM

Well Jacob continued to do well yesterday afternoon and was great until into the evening. He hadnt pooped since that big one Saturday afternoon though. So I gave him a suppository about 7PM so he didnt get too backed up. Shannon came over last night to see Jacob. He was playing up a storm and happy and great. I got a call from Scott and he ended up coming over again too. So we were all kinda talking and playing with Jacob and just like that it happens! Its so quick. He just crashes just like that. His heart started to drop, his lips started to turn blue, and he was choking. I rarely get scared when that happens anymore. But this time was different? I suctioned him and couldnt get him to look any better. He was trying to cry and couldnt. Tears were pouring down his face. He was sweaty. Might have had something to do with him pooing??? Not sure. I unhooked him from everything and carried him over to the couch. Started to cough him. I was glad Shannon was there cause she was handing me the suction after each cough. It was a big help. It took what seemed like forever to get him stablized again. I was shaking by the time it was over. I needed to cough and cough and cough him to finally get him 'back'. How scary it is sometimes. For a minute I had to just think and say to myself...ok this isnt working what can I try??? After getting him to stop from choking Iput him on his pappy (Bi-PAP) and he seemed more comfortable.
Wow that happens like I say so fast. One minute he is ok and doing great and then just like that its crazy. I worry if I can get him to come back and be stable. Not often though. This time I was pretty scared. Then I was worried about him all night.

He was pooped and went to bed pretty good. But he kept waking up and crying. His 02 dropped a bit on pappy and stayed that way all night. He wanted me to sleep right beside him all night which makes it harder to sleep as I worry about rolling or something on him. My couch is pretty big but not that big! All night he cried and moaned and woke up. HIs 02 stayed low about 90-93 all night. His belly kept filling up with air too. His g-tube was pushing air out too. He was uncomfy with all that air in his belly. Poor baby. So needless to say no sleep for mama again. I got a bit but not much. Its hard to sleep when your mind is running a mile a minute... Any suggestions how to turn it off would be great!!!

This morning though he was so much better. He was a bit fussy at first until he tooted most of the air out of him!!! His 02 was better too. I had the new nurse again today. It was her second day. She was amazing. Im really really impressed with her. Scott is too. She was singing to him, playing with him, reading to him. He really seems to like her and I got soooo much done today. Even scrubbed my baseboards in the hallways and livingroom, vacuumed, did some laundy and dishes. And Scott even helped! Wow a man not afraid to get his hands dirty with housework. gotta love it. I put him down for a nap today about 2 PM and he went right to sleep and then I fell asleep on the floor beside him. WOke up in a bit and then went to lay on the couch for a bit longer. I woke up to Jacob playing. The nurse had taken him off pappy when he started to stir as to not wake me up. Filled up his feeding pump and all. I was really impressed. I guess I jumped up and looked around wondering how long he had been up and why I hadnt heard him. She said he woke up happy and let me sleep. It was a much needed nap!!! I was pretty thankful.

So thats it for now. Jacobs playing and watching the Wiggles...lol who knew eh!!!

Again thanks for the prayers and all the emails. I love to read the guestbook so sign your name to let me know you were here.

Hugs and prayers and butterfly kisses to everyone!!!

Angela

Monday, November 8, 2004 3:00 PM

Our prayers were answered... THANK YOU ALL SOOOOOOO MUCH from the bottom of my heart.

On Sat I gave Jacob lots of Miralax again and another supossitory and wouldnt you know it... HE filled 4 diapers FULL of poop! Carol those poopie dances worked! I was so happy and he looked so relieved too! He was tooting away all day Sat and Sun. But lemme tell you. He was doing sooo sooooo well. Talking more then I think Ive ever heard him talk. Making so many sounds and laughing and playing and being JACOB again. The best thing is that he was really loud. Louder then Ive ever heard him. He still had his catheter in him until this morning. Sat night my brother and Shannon came over for a few drinks and to meet Scott and see Jacob. They were so happy to see how awsome he was doing. He even was saying Aannn for Dan. He LOVES his uncle Dan. I know that just made his day.
They stayed pretty late Saturday night so Jacob was pretty tired when they left. Way past his bedtime. He enjoyed all the company though. BUT it took me till 5:30 AM to get him to sleep. I ended up giving him some codine at about 5 am because I just didnt know what was wrong with him??? Maybe the catheter was bugging him? He only slept until about 8 Sunday morn. I was really really tired.

Sunday he was again even better. Bless his heart. He sure does bounce right back. He seems better then ever really. I just relaxed most of Sunday with him. Had almost no energy to do anything! Jacob was really tired and yawned alot. He ended up sleeping for most of Sunday afternoon. I didnt think he was goona go to sleep because of his long nap Sun but he did. we cuddled and Aunt Kara visited Sun night. He was even saying her name too. Ra ra...ra ra... lol I hope they all realize how special that is. I still have yet to hear him say mama on a regular basis. Its been a few months Id love to hear that again. Overall though I think he is completely out of the woods. His chest sounds great his vitals are amazing. Thank heavens. About 6 30 Alyssa came home and told us all about herweekend with her daddie and brothers and sister. She was happy to be home. I missed her so much. Its been quite awhile since she was there. She had a good time though thats all that matters.

Sunday night after I got alyssa bathed and into bed I though what the heck Ill try Jacob and about 11 I think he did fall asleep. He slept right through the night too. Didnt make a peep once. I on the other hand was tossing and turning onthe couch all night. I really gotta start lugigng all his machins upstairs and sleeping inmy bed with him. I will maybe tonight for sure.

Im tired can you tell??? Scott left sun afternoon. I miss him already lol! I cant believe I do but I do?? LOL

This am our new nurse came for her first shift. She seems alright. You cant tell the first shift its all showing and explaining everything. She took out Jacob catheter and he winced a bit but did ok. I asked himif he wanted a bath and you shoulda seen the look on his face... it was awsome. He talked and begged me to take him upstairs. I couldnt do it fast enough. In the tub he ALWAYS pees. So when I was undressing him he gave a little squirt. I was happy and thought it was a good sign that he may be able to pee agian. Well inthe tub it was like an endless waterfall!!! Peed for SO long! Again thank heavens. I was again sooo happy! He looked like he was thinking about it. Hum I feel like I gotta pee its been a bit since I have?? Then when he did he laughed and was happy! Not as happy as mommie though. Today he has has had a good day. He just woke up from his nap because Alyssa just got home from school. Mom came to see Jacob and was happy that he was doing so good.

I just want everyone to know that I know I am extreamly lucky to have you all. You all keep me going and keep my spirits up. Thanks for ALL the messages you leave us. I love to read them all. You all mean so much to me. And also for all the emails and phone calls. Im TRYING to get back to all the emails I have gotten. Im down to about 600 left that I have to do something with.... So bare with me k. Ill be with it soon..
Again thanks everyone. My heart is filled with happiness these days. And you all are a great part of it. We have been getting many and tons of happy mail. To the Bears Who Care...you are all wonderful. I love you all so much. Thanks so much everyone!!!

All my love, and prayers
Hugs and butterfly kisses.
Angela

Saturday, November 6, 2004 2:00 PM

So sorry for cutting my journal short yesterday and just saying hes in a coma and not good right now. Some days its harder then others to write. Its hard to get my feelings down and use just my fingers to say what I want to say. How do you even express the feelings I have? Its so hard somedays. And when I write it and see and reread what I write is just as hard somedays. It kinda opens your eyes a bit...

On our way home from the hospital yesterday Jacob just started to not be right... I know he had trauma to his belly and an IV and was tired but he jsut seemed off. Feel right asleep coming out to the van from the hospital. After loading the van and all his machines and stroller (I had to lie to get him home) Well not lie just said that he was in a vest believe me he is safer in my arms with me in a seatbelt around me holding him and cradling his head then on a stretcher with a strap over his belly and his head BOUNCING all over the place completely unsupported. Anyway on the way home he just squeezed his eyes tightly shut. Started to sweat profusely. He soaked two receiving blankets with sweat, his clothes, hood for his pappy and the pillows. His heart rate started to rise. Mind you also he hasnt pooped since Wed PM. Just constipation to Jacob can be life threatening. We had to monitor his pee output. He was not fed or had any hydration from 2 PM (tube pulled out) until the IV was placed at 11Pm last night in ER. He was running at 40mls per hour until we left at 11 AM yesterday. Then I started his feeds at home about 1 pm. He wouldnt wake up. He spiked a fever, and with all that hydration going into him he shoulda been peeing. By 5:30 pm Fri night still no pee. We called the pead and they wanted us to take him back to Toronto Hospital. I have had enough. I really have. My poor baby had slipped back into a coma and his bowels and bladder have shut down again. I just feel completely at a loss when in the hospital with him. Explaining everythign about him to every person again and again. To even get somethign to keep him comfortable is a fight. To feed him is a fight. I decided that THIS time I was keeping baby bear at home. I was not going to take him back into that hospital. He does much better at home anyway. It may be a wrong decision?? Maybe not??? I feel more comfortable at home. He just looked awful. Alyssa went to her dads for the weekend. Mom, Shannon, Dan, Sylvia and Scott were all here with me last night. Sylvia left after we got a foley cathater placed into his penis. That took two tries also. He actually screamed when she took the first one out. As weird as this sounds I was happy to hear him cry out in pain. It was a good sign that he still has feelings and emotions and was still 'with' us.

I kept up with rectal tylonal suppositories every two hours, and motrin/advil via GJ tube every other two hours so at least every two hours he was getting something to keep his temp down and his pain under control. He couldnt come off bi-pap for the last two days either. I feel better knowing hes getting some rest from his labored breathing at least. His blood work from Thurs night in ER showed that his WBC count was as high again as when we were last admitted. His platelettes were high too.

I was told several times that when Jacob has had enough and has fought long enough and was tired...that I would know. I dont think Ill ever feel that way. How could I say to myself yet alone anyone that my son is giving up and too tired to continue anymore. I dont think I will ever feel that way. He means so much to me. He holds my heart full of love. No matter how worried I get and saddened by his inability to even move somedays, just to hold him and look into his eyes, see him smile hear him talk makes me feel so much better. I feel like I can handle anything God brings my way when I hold my child in my arms. Jacob is such a special little boy. I dont think Ill be able to go on if and when Jacob ever gains his wings. He is my life, spirit, strength, love and everything. Last nigth he was almost completely unresponsive to us. We would talk to him, sign to him, massage him, tell him how much we all loved him. Pray for him, hold his hands. Oh his hands. I could feel his fever burning through every inch of his body. He was so hot. Nothing was bringing his fever down. I told him over and over and over how much I loved him, I think mostly in my head. I didnt want everyone to know how scared I was. I was over come with happiness when mom and Shannon told me that he was starting to squeeze their fingers when talking to him. He was given more kisses that could last him a lifetime yesterday.

About 7 pm last night Jacob started to open his eyes a little but he would cry out. I dont know if in pain, uncomfort? What could be wrong? His belly, bowels, penis from the cathiter? Just miserable. At least he was crying out. Sad that Im happy to hear my baby boy cry... Shouldnt be like this. I shouldnt have to worry if my son is going to make it through the night. I shouldnt have to tell him that if he needs to give up Ill be ok. If hes too tired to fight anymore I will let him go. Choosing to keep your child at home comforted is so hard. I manage his feeding, urine output from his catheter, breathing from his bi-pap with maximum pressures, his heart was over 200 most of the day and night, his 02 was only 90 most of the day and night also. Honestly I wanted to cry so bad. I just wanted to unhook everything and give him pain medication to help him, comforthim, take all his pain away. He shouldnt have to suffer. I cant stand to hear him scream and cry, even if its just a little wimper and he has no strength to cry out...just moan I dont want him to suffer at all. Hes been through so much. My little angel, my fighter, my baby bear.

About 8PM he started to come around even more. My mom had been crying most of the time there. Thats how I knew that Jacob was worse than I was leting myself believe. If she was crying infront of Jacob which everyone knows I dont want him to see. and she couldnt control her emotions then I knew he was in pretty rough shape. Why do I not let myself see how bad he is sometimes? He was at least completely out of his coma. He started to literally scream out in pain. His heart started to go into 210s 220s he just cried and cried. I couldnt handle it anymore. Nothing I did soothed him or comforted my angel. I got out the big guns again. I gave him a minimal dose of codine. In about 10 minutes his eyes got a glaze over them, his heart rate lowered, he started to TALK to us. He was out of it I could tell but at least he was comforted. It was such a relief to help him. I hate to use it with the risk that it could lower his resp rate and put him in more distress but on pappy he has never ever had a problem with a minamil dose of it before. I was so happy to see him feeling better. He went back to sleep about 10 PM and his heart just keep dropping lower and lower. About 130 -140 most of the night while he was asleep. This is even higher then when he normally cries awake most times. I knew he was still in discomfort but better with the condine. Everyone left and Scott stayed the night to help with Jacob. I had to keep track of everything I was giving him and doing with him. I feel exhausted and tired so bad. Just wanted to make sure I kept track of it all in case I needed to know something quickly.

The catheter is staying in until Mon Am. I dont have a nurse again until Tues Ithink. I hope she is coming Tues and Wed instead of Thurs and Fri. I hope I am making the right choices for my son. It feels right so thats all that should matter right. If you can just say to me that yes Ange its ok...your doing a pretty good job (even if you dont think so) it would really help me to think that its all ok.

He woke several times through the night. Moaned alot. At 7 am he woke up and I looked at his monitor. HE WAS AT 120 FOR HIS HEART AND 02 WAS AT 99!!!!! He wanted to talk and watch his wiggles. Even smiled for us. He still hasnt pooped its been 4 days now? He has had numerous suppositories and also Miralax, its an American laxitive that the kids do so well with. Lactulose causes too much belly cramping and didnt want to touch that with him. I pray PRAY PRAY he poops soon. By 12 PM today Sat... he is doing so well. Peeing through his cathater great. Tolorating his feeds, even laughed and talked to me afew times.

Ill update more as he DOES get better. Please understand why Im keeping him at home this time. Not to let him go...but to keep him as comfortable and in a warm safe, comfortable environment as possible. I love my son so much. Thanks for all the prayers and wishes emails and phone calls, and blessings.
God is good.....

Angela

Friday, November 5, 2004 10:35 PM

I dont even know where to begin??? UGH what a crappy few days... Lets give it a try anyway???

Ok as you know Jacob had a horribe couple of weeks a few weeks ago. Well he had made a huge turn around and started to NO-- he was back to his old self again. Peeing great, pooping, laughing, playing, just being Jacob again. Well PRAYERS are needed again.

Yesterday Jacob did great. He had a good night and woke up happy and rested. He was playing on the floor and watching his Wiggles and I had his nurse here to. Finally I had a nurse as now Im down to just Thurs and Fri nursing again. No one is available to come and nurse for us or available to train.... Anyway he was doing great I went out to get some running around done, came home and he was sleeping on his pappy. He woke up soon after and we changed him and played with him for a bit and were just kinda talking and she got up off the floor to go do something and ugh..unfortunately his GJ-tube got caught around her foot somehow and she pulled it out of him about 3 inches. Well if youve ever seen a GJ tube you would know that just coming out a few centimeters could cause a major problem. It could have slipped into his stomach and he could aspitate and reflux and cause many problems. Well after hours on the phone with Torontos Hospital and the Hospital here and his Ped, and so many others, we thought his tube might be fine. We were gonna run his feeds and just watch his G tube thats vented really close and if his feeds started to back up and drain out then we would know that we had a problem or that it was out of place. Well after thinking that we had it all worked out I looked at the tube and it was actually split in half...yup! The tube was like someone just cut it in half? So we had to go to Toronto no matter what. His tube was litterally broke.

After much discussion his nurse wanted to drive us up and mom could stay with Alyssa...Shannon was going to but she felt bad and wanted to be the one to go and take us down there. I knew that Jacob wouldnt be able to go all night wthout eating or any hydration... So we packed everything up and headed to Toronto. We got there and they knew who we were right away...Pretty bad when the major hospital of all Ontario even maybe Canada knows you by name..even the Emergency dept. They took us right into recess and isolated us. After going through Jacobs history with 2 different doctors, the IV team, nutritionists, and RTs and so on AGAIN! I thought we would be able to get somewhere. I thought they would be able to feed him TPN again through IV but nope . We ended up getting an IV and just running fluids through. About 1 am we ended up getting a room upstaris...IN THE PIT! A room with 3 other SICK children with infection. I was told to sleep inthe playroom and he was to sleep in a crib... YAH RIGHT!!! In about 10 minutes a big bed was brought up to us so I could sleep with him! I was not about to leave him inthe hands of people who didnt even know what SMA was. OH yeah the ER doc actually said to me that she didnt even know anything about SMA! I was at least happy with her honesty.

Anyway we got a room and settled down and after talking to the 7th floor pead doc till about 230 3 am I got to lay down about 4. Was woke up about 7 am when Sylvia (Jacobs nurse got there) The waiting game started and about 10 am we got to go down to IGT and have not 1 but 2 tubes put back in. His belly was bleeding bad he was screaming and heart rate was high. The first tube they put in was a dud. There was a hole in it...so they had to take it out then put another one back in. Poor baby. He was so upset and just doesnt under stand why we keep hurting him. You know what really sucks? These tubes were placed to help him live a good quality of life. OMG he has had so many problems with these dam tubes.

Then we went back upstairs after they felt that they were in place and happy with them.

We are home now...Im exhausted and dont feel like writing anymore...sorry :)

Just know that he was really touch and go this afternoon... He was in a coma again. He has a cathater placed because he cant pee. In pain...high heart rate...Prayers are needed in a bad way...
Ill let youknow tomorrow whats all happening..
Ange

Wednesday, November 3, 2004 6:45 PM

Jacob update:
Well Jacob has been really good these last few days. Monday night he was having a great night. Played and laughed most of the night. He went to bed great. Only woke up a few times through the night needing mommie cuddles. Tuesday morning we were giving him a bath getting him ready because he had a doctors appointment to get his 2nd RSV shot and his MMR immunization. But during the bath he was sounding really congested and rattly. I didn't like the sounds of him at all. Neither did Scott. He really sounded awful. I needed to suction him upstairs too. So needless to say with the weather being so damp and cold and rainy I thought his shots had better wait. Just in case. He is really still recovering from his bout of pnemonia and recouperating. I don't want to push him too far. So I cancelled the apt. Today woulda been a great day to take him because it was warmer and nice out.

Tuesday Jacob did well. Was a good boy for mommie.
He wanted lots and lots of mommie cuddles thats for sure. I totally have a spoiled little bear on my hands but do you blame me??? Course not. Overall Im totally impressed with how well Jacob has bounced back. He really overcomes some horrifying times like a champ. And of course always with a smile.

My mom came over and played with him for quite awhile last night.
He was pooped about 9 PM last night so he went to bed earlier.
He still has diareaha pretty bad. This has been ever since we were at the hospital. All his stool samples came back negative except the C. Diff one but if he had that Im assumeing the hospital woulda called me? He is peeing great and his temp is holding well. Sometimes hes still a little warmer then normal but I still chalk it up to his teeth. I think anyday it will be popping through. Hes gonna look so funny with a new tooth. We are so used to seeing a gummy smile. As soon as its through Ill show you a pic. I have tons of new pics to show you all but again my pics cant go back up till the 12th. So I am trying to get time to start working on his photo website. Just cant find time to do much. Opps this should be going into my update right? lol

Alyssa update: Well Alyssa is doing well. The teacher finally is giving her books that make her think. Someone posted and recommended talking to the principle and just wanted to let you know that I already did that. And got nowhere. But they did report it and took note. Dawn I do download projects for her to do off the internet and she is doing mostly grade 3 and 4 work. Loves a challange. I sent in tons of work for them to see and I got back a letter saying nice work.
Me and Scott decided to let Alyssa meet him. I havent let her meet anyone I have dated because...well for one I have only dated someone once before in the last 15 months and 2 because I think she is dealing with enough right now. Its hard to let her see me spending time with a new beau when I have hardly any time for her. It was a difficult decision to make. But of course Scott reasured me that he was gonna be nice and sweet and he is used to 7 year olds as his son Kyle is 10. It went well. Alyssa of course showed off the first while and then after the night went on we had supper and she settled down. She really likes him. It was so funny. He left before she got home from school and went for a coffee so I could talk to Alyssa about it first. I asked her if my friend could come over to meet her and have supper with us. She said that I couldnt have a boyfriend until she meets him and sees if he is nice. What a sweetheart. She said I couldnt kiss him too. So she said that it was ok for him to come over and meet us. So he came back and all went well. After when he wasnt around she whispered to me that she thought he was cute and told me I could kiss him!!! LOL what a girl.

My update: Well what can I say... Im pretty darn happy right now. Thank you all so much for the warm welcome to Scott. Yup hes a great guy eh!!! He is great. We are gonna try to take it slow and he totally understands that my children come first. He knows that ahead times may very well become extreamly emotional and rough. He wants to be here and support me and my kids. I cant tell you in words how fast these feelings come. Not just me. He is open to words and tells me honestly his feelings. We tried to just be friends and take things slow but we both really hit it off. Talk for HOURS and hours on end. We just click. So we shall see. Who knows he may end up being the second most important guy here? LOL Now that pushing it a bit!

I got a great email from Kim. She is with Angels of HOpe and was the one who signed Jacob up for all those wonderful knitted angels that were sent to us from all over the world. Well I guess she works with the Santa shop in our local mall too! Well didnt she go and mention Jacob to Santa and Santa wants to come and do a personal appearance for Jacob. OMG wow I cant believe it. Also she said that the girls have a special something from Santa put away for ALyssa. And Alyssa can have a free photo. She also wants mommie and Scott to get a photo free too? We will see about that. Thanks so much Kim. I cant wait to see Jacobs face when HO HO comes to visit. LOL its gonna be awsome. You all are so great to me and my kids. Thanks so much Kim.
Also we just got a big package in the mail. It was a beautiful Gund Grouchy Bear. It is from the Grouchy Bear Foundation Inc. In hounor of Kenny Purkey. This bear is meant to take all the pain away from the children and Jacob just loves him. So soft. Dan Purkey sent it too us. Thanks so much to youall. It means so much to me that Jacob is thought of by so many wonderful people all over the world.

Well I guess this update is long enough for now. Again thanks for all the welcome messages to Scott. He IS a dream in so many wonderful ways. I havent smiled or laughed this much in..well I honestly dont ever remember being this happy. When times are good they certainly are good!

Love and hugs and butterfly kisses!!!

Monday, November 1, 2004 7:40 PM

Im going to try to change up Jacobs website a bit. If you havent noticed, Im kinda all over the place when Im doing an entry. So I think the easiest way to please everyone is to start with a Jacob update then do Alyssa, and myself. And if prayers are needed then I will ask people to pray in a seperate paragraph also. This way its a little easier to read. Hopefully!!!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Ok Jacob was up pretty late last night. Not sure why. He didnt want to go to bed. Was a little fussy, so about 12:30 or 1 am I had to give him tylonal to settle him. I think its just that darn old top tooth? His secretions were flowing constantly last night. And his right cheek is red. So Im assuming that is whats up. After he finally went to bed he was ok. His heart rate has been great too. Overall I think Jacob is finally back to baseline. I cant be more thrilled to see my big boy getting better each day. We were worried that he lost his voice for a few days. You never know what an illness will take from him but he seemed to have bounced back! This morning and yesterday he has been really really vocal. He has been asking for my friend to blow him bubbles...baba baba. He is keeping him busy for hours Im sure Scotts cheeks are sore by now!!! Jacob is so amused by the sound the bubbles make. Today he had 1 small episode where he desated and choked and couldnt get his breath back. it took about 5-8 minutes to stablize him agian. But like always he was smiling right after like nothing ever happened. Jacobs g tube is draining a little more than I would like but so far he is still tolorating his feeds well. Ill keep an eye on it for sure.

Now for Alyssas update...
She had a great time last night on Halloween last night. Shannon braved the rain and cold to take her out for me. She said she was good and she got two grocery bags full of CRAP to eat. I am gonna hide it because she has been on a sugar high for two days now and driving me almost nuts!!!
She really has been pretty good lately. The first few days I was home she was a little testy but thats to be expected with her worring and having her routine inturrupted. But she is doing well now and enjoying school. Unfortunately Im still not happy with her ciriculum. SHe is bored in school and the work is WAY too easy for her. I have talked to the school and written notes and it just is not going well. She is bored and I hope she does not slip and let her grades fail from that... We shall see.

Now for me. I have been debating if I wanted to keep this as just Jacobs updates or if I wanted to talk about my life as well? I have met so many wonderful people who care for not only Jacob but our whole family. I think it is my journal and this is my way of memories and to remember things. And I will write what I want to in here. So many people ask about how I am doing and wonder what goes on in my life too. Well...I have news...
The new is... I have kinda met someone. Yes a man!!! lol
Im not sure what will happen or what will go on but so far I am extreamly pleased and happy and have so much more smiles in my life. This man yes..is that Scott that was updating my journal for you all. And he came to visit us in the hospital and has learned so much about SMA. He actually, I think knows more about it then me now. Which is alittle intimidating. He is smart, intelligent, interesting, funny, sweet, nice, thoughtful, emotional, man I could really go on for a long time about this. But Ill leave it there. Actually he has read my whole journal history and we can talk for hours and hours. We talk every night, and well I didnt think I wanted to start anything with anyone but I just cant help my feelings and I (think) I know they are mutual. He makes me feel so special. Loves the kids. Is a great dad to his son, and has a great job, lives about 1.5 hours away. I feel safe with him. Anyway just thought that Id let you know I havent completely fallen into a hole. I am so happy right now. Im a little scared about my future and Jacobs and everything and he can talk me outa feeling so scared and look at the positive. I havent been so positive in I cant remember how long. But we will just let things happen and go with the flow right! lol Inside joke. Anyway thanks for listening. Its hard to know what I can and cant write on here. It shouldnt be that way. This is my journal and my personal history of my experiences in my life at this point. Of course Jacob is the focal point of this website but so many people ask about me and how Im doing and what I do and how I feel. So I guess I can talk about anything I feel like right?
Sorry hope this was ok and I promise no more real sappy ones for awhile. Just little updates here and there. I just had to introduce Scott to everyone. He may be here for a bit or awhile. Either way Im glad I met him and got to know such a different and intelligent man.

Lotsa love and hugs
Ange

Sunday, October 31, 2004 3:00 PM

Happy Halloween everyone!!!

I added 3 new photos to the photo link. Sorry I cant send through more. Not until the 12th anyway. I will try to start working on his photo page soon.

Hope you all have a great night. So far many people I have talked to had Halloween last night. Ours is tonight. And its COLD, WET, and was even freezing rain earlier. Its gonna be raining mostly all night so Alyssa wont be out for too long. My brother and Shannon is taking her out. Ill have some hot chocolate and marshmellows waiting here when they get home!

Thurs night Jacob was up alot. I think hes just uncomfortable. I was exhausted and couldnt get to sleep so when nurse Sylvia came I went back to bed and slept till 1 fri afternoon. I guess I still needed some more sleep. My cold is almost completely gone. Friday night Jacob was pretty good. He had one bad crash that took me about 5 to 10 minutes to get him stable again. I was almost gonna call 911 but he came back. Alyssa went to my brothers Fri night and had Dance in the am. Jacob slept great Fri night and Sat he was full of energy. Talking away like crazy. I love the little babbleing . I wish I knew what he was talking about most of the time. His secretions are still pouring out of him. But hes able to at least spit them out on his own. I think they are from that top tooth coming in. It should be any day now and then he will have the two bottom ones and then a top one. Hes gonna look so cute. He is all gums when he smiles and seeing a tooth there is gonna take some getting used to. He had a great day Saturday. Alyssa went to a Halloween party from 4 till 830 last night. She had a blast. Her dance hall held it. She came home and was sooooo happy to tell me all about it. Her Halloween costume was a cheerleader but she changed her mind and wanted to be a doctor. She has scrubs. So I gave her my stethascope and a mask that we wear around Jacob when we have the sniffles. She was sooo happy. She said everyone loved her costume. Not sure what shes gonna wear tonight.

Today Papa Bruce and Dale came for a visit and Jacob was of course hamming it up for them. And later today His Aunt Kara is coming.

Have a great night. Thanks for always coming to check on us. Love and Hugs.
Angela

Thursday, October 28, 2004 7:40 PM

Well I am so happy to be home!

We got home about 9 Tues night. We had hotties for ambulance drivers. Made the ride fun anyway. Those trucks really suck. They dont have any shocks and poor Jacob was bouncing all over the stretcher. Tell me how he is safer in that then my van. Hes on a stretcher with a strap laying across him. At least we were cradleing him and his head in the van??? Anyway we made it home safe and sound. He ended up sleeping a bit on the ride home so of course he was not ready for bed until 12-1 am that night...

Alyssa was happy and ready and waiting for us to get home. You shoulda seen Jacob smile when we got home. He looked at the TV and just smiled!!! :)

I went to bed. Unfortunately I caught something in the hospital Sunday and it hit me really hard yesterday. I slept all night Tues night and when we woke up on Wed I was out for the count. Thank heavens Sylvia was here all day yessterday and I went to lay down for a few hours. I felt even worse when I got back up. I could hardly even move. Took some tylonal cold and flu some gravol and then some neocitrin. Kicked what ever it was. I asked mom to please come back over and I went back to bed. After alyssa went to bed I put Jacob to bed and went to bed with him. I think I just needed the rest cause I feel so much better today.

Jacob really does prove himself eh. He is doing so well. He sounds great despite his exrays showing his lungs are actually worse then when we were admitted? He is happy and playing and having a great time. I knew he would do better once he got home. He loves to be homw and see his sister.

When she got home from school and she was telling us about her day Jacob just laughs right out loud to her. He loves to listen to her talk and stares at her and laughs.

I love my kiddies.

I cant say it enough. I havent been able to get through all the messages you all left for us but I am trying to. To all our new visitors thank you so much from the bottom of our hearts for all the prayers and wishes. I tell you the power of prayer never ceases to amaze me. Thank you all so much. I truly do appreciate it.

Love and hugs.

Angela

Tuesday, October 26, 2004 3 PM

Well finally almost 2 weeks later and still no real answers other than well not sure whats going on? Mostly saying its his disease??? Whatever Anyway this is what the tell me....

He backed up, aspirated and developed aspiration pnemonia. Then it became septic? Maybe they say? He developed illias? (sp?) bowels shut down. Once we got the pnemonia under control and the infection better his bowels started to work again? Then they did all the tube changes to him (thinking he was intuscepting..) and cause damage to them making them inflamed? Then now he caught a cold. But he is smiling and happy. His heart is back up to normal finally and still not sure what cause the low heart rate or urine retention or coma?

Are you all as stumped as me? Im just glad to be getting him outa here. Our ambulance is picking us up at 7 pm tonight so we should be home about 9 or 930.
He is coughing and sneezing and slight fever still. I can whip that at home. He comes in with one thing and leaves with another. Even with the reverse order???
Thanks everyone for all the prayers for my baby bear. IT means alot to me.
And especially to everyone with the wonderful advice and phone calls.
You really do help us get through our hard times.
I cant wait to catch up on the emails.
Hope everyone is feeling ok.
Again thanks to everyone.
Ange

Monday, October 25, 2004 9:51 AM CDT

hi everyone
sorry I had no access to the comp all weekend
had many visitors this weekend
Loved seeing everyone

Jacob contracted something while here
Maybe c deficile?
Waiting for nose swab and stool samples to come back
We cant go home till his fever is better?
He was 103 most of the weekend
Sneezing and coughing but still good spirits
He is tolorating his feeds again
Praise the lord, our prayers were answered
The power of prayer

We should be going home soon I hope
We have to take an ambulance now though. They arnt happy with us just holding him in our arms and we went through this before with them
Ill update later when we know more

Brad and Jenny Cambell
Mom got the balloons and teddybear
Thanks so much
And Brad I enjoyed talking to you this morning

Jen Thanks for all the phone calls and talks

Everyone else I cant tell youenough how much it means to me to see the support my little bear is getting

Thanks to everyone for checking on us
Love and hugs to all
Angela

Oh Jacob sends slobbery wet kisses to everyone too!

Thursday, October 21, 2004 1:20 PM

Hey girls...I had some extra time to come down today. My parents and his home nurse and nurse tiff is here from home.
I have read some of the emails. Ok heres whats up as of now...

He was being fed through his gj tube and everything is backing up through his g port. LIterally everything going in is coming back out.
So after 3 more tube changes and trama to his tummy and intestinal track they stopped feeds tues pm. Letting him rest. He had another ultrasound and now its showing that his whole bowels and intestines are not moving at all. They are saying its progression of sma and his disease...BUT being on this chat i havent heard of any kidies stop beinga ble to be fed???? Am i wrong???
They are talking about doing a picc line and perminant TPN for time being. Long term its not an answer. They are just not hopeful. We dealt with this before they look at Jacob as a lost cause. And dont think he will make surgery.
Why the picc line?
They feel that with his not tolorating and not bowel sounds and ultrasound not working that a nissan and g tube feeds will not do any good or a j tube surgery will not help either . So it looks like this is the only option for now. They said it may be from an underlying issue and may 'start' to work down the road. But right now thats the only issue. I called bethyl and she is on holidays and dr
scroth is calling me tonight. Im hoping that she can help a bit. He will be sedated and intubated for the picc line??? Not an option here as they cant successfully extubate here. Im meeting with ICU team soon to talk about Bachs extubation protocol to see if they would follow it. I say well if your telling me he will die your way to extubate why not try my way??? What do we have to lose. My son!!!!!
These a--holes just dont get it.
I am not comfortable with long term tpn? Not sure how he can tolorate it...

LIz or steph or tracy.... any ideas?
They say that a more brokendown formula is better for Jacob?? I dont want to try him on anything other than tolorex or vivonex.

Really frustrated right now withtheir lack of knowledge and
understanding right now.
Hes on bi-pap except for coughing. His heart is still extreamly low.
They say that its sma again. He used ot be 120-130 awake now 80-90 and sleeping used to be 90-110 and now its 40-60??? They arnt worried but with other kids having heart issues Im extreamly worried about it.
I tell them its different and they say well hes older now so its more normal? The day he gets sick it changed? Its not normal for him???

Really stumped and frustrated and not sure what to do? God help me with the decisions for my son. I dont want to lose him to a mistake?
Picc line sounds scary? Dammit I wish I had some answers and more knowledge. I hope Scroth will have some answers for me. I wish I was rich and could take him to the states under proper care. Please lord hear my prayers and keep baby bear safe.

Please excuse how tired this sounds...
I just read it and omgoodness wow I make things sound awful eh???
Well The nurse woke jacob up at 11 last night and he didnt get bakc to sleep until 4 am so I am running on no sleep. They woke him up at 730 for bloodwork. So about 2 hours sleep for me. Stress and worry and lack of sleep are taking a toll on me. SO sorry :)
Ange

Wednesday, October 20, 2004 120 PM

If anyone can help could you call me here please. 416-813-7600 ext 3947
Jacobs not tolorating his feeds again. This am had another ultrasound and had '2' more tube changes. One didnt take and tube was a dud then the second took. They tested and feeds still refluxing back.
They are suggesting that he either have a pic line with TPN perminetly but say that its hard on hte liver or have a fundoplication (sp?) but with MAJOR risks. They said if we do that that they could do with sedation and epidural and hopefully no intubation willl be needed. If intubation is required he will not come out with out a trach. Or less than 5% success extubation. Any ideas? They are giving it a few more days on feeds with new tubes to decide. Im so exhausted and worried about my baby bear. I just dont know if trach is an option I can or let Jacob have. I see Jimmy, Casey, and Connor do well witht hem. I just dont know anymnore. My poor boy started to do well then wham he
has anotyher set back> Any ideas ladies.
This was his bloodwork yesterday. These were outa wack...
Biochemistry]
ALK PHOS low 140
PO2 (VEN) 53
UREA 5.6

WBC 20.5
HCT .349
MCV 78.8
Plat count 431
Polymorphs 16.2
Lymphocytes 1.2

Man I just dont know what to do or think. Urine retention and not tolorating feeds is not part of sma right?
Do I just get a pic line and TPN? ANyother kids have that?
Do I risk losing him to surgery?
Dammit I hate sma. He was doing so well.
I read some of the emails finally and I hope you all dont think this is my fault from giving pedialite last wed night? Thats hard to take.
I have had to give it before and just not sure whats going on> Im not ready to lose him and pray he gets through this and I can make the right decisions for my baby.
Ange

Tuesday, October 19, 2004 130 PM

Praise the lord! Man Jacob is a little trooper eh!
He is tolorating his new gj tube and his vivonex at rate of 30 mls per hour...WOO HOO
He still has Tpn running at rate of 20 also
He just blew his IV again. His arm and hand is all puffy. Waiting for IV team to start a new one. Hope it goesa s easy as the first did.
Guess what???
He peed. Took out cathetor today and so far 1 pee. So so happy about that.
Still really weak and not happy but doing better
Might be able to go home Fri! Hope so.
His blood is funny. Ill bring it down tomorrow so I can type what was weird with it. Some of his things were outa wack.
Thanks for all the prayers.

Mom thanks for taking ALysa and making sure that he is getting to school and able to play with her friends and keep her routine. I miss her so much!
Our home nurse came today so I was able to have a shower and eat and relax a bit. She missed Jacob and wanted to come see him today.
Thanks again for all the prayers. Hopefully we will be home soon and able to get back to normal. Love and prayers

Ange

Monday, October 18, 2004 12:41 AM CDT

Well Sat night all Jacobs feeds came back out his gj tube. So they stopped them sun am. I pushed and begged for at least TPN as he cant tolorate his feeds again. Started them Sun pm at 7. Had to get really angry with them.
He was really really uncomfortable sun night cried for 6 hours. I told them to give him codine and finallly he slept.
This am they took him to IGT again and still not seeing an intusception so they advanced his gj further. They are not hopeful that this will correct itself. Only other option after trying this is to go to g tube feeds but really worried about reflux and aspiration as he couldnt tolorate them months befroe. Then if that doesnt work alternitive is getting a nissan or j tube. Both requires intubation and their success at extubation is LESS then 5%. Really praying that we can fix without surgery.
Still on antibiotics and trying to see why he cant pee?????
Keep up the rpayers please hes not out of the woods yet.
Mom and Sandy came to visit yesterday. Also Jacobs dad and aunt Kara.
I miss alyssa so much. Thanks for keeping her mom.
Love and prayers to everyone

Ange

Saturday, October 16, 2004 6:43 PM CDT

Update...It is Saturday night at 8pm...Jacob had a fairly good night last night...around 1 am unfortunately his catheter fell out because they were not able to iflate the balloon so it popped out and woke him up. They decided to leave it until morning to see if he urinated on his own. He did not go back to sleep until 3 am. Even with mommy laying in crib with him. So he woke up at 730 am with a distended stomach hard as a rock...scrotum was really swollen too and just as we were going to put his catheter back in the little bugger peed all over us. So they left it out until 10 and he was again in discomfort and hard as a rock and put a size 6 catheter in and it was too small. So they took that one out and put in a size 8 and thankfully the balloon inflated. Since then he has been urinating quite well on his own...and we started him on a new med metoclopramide and it is supposed to move his food through his digestive track and bowels smoothly and so far so good! He has had two bowel movements. Unfortunately due to the IV meds (clindamicin and glendamicin) he has severe diareah. I started him on his formula again through his DJ tube 25 mls per hour...his regular is 51 and so far he is tolerating that, so that is great! He is still receiving IV potassium chloride (20mls per hour) He is still retaining water though his eyes are puffy. But the swelling has gone down some. He has been on bi-pap 24/7 since we got here. I'm doing cough sessions 4 times a day unless he needs it more. Agressive CPT, suctioning. He has gained a little bit of weight whoo hoo....Last night my mom and dad Dan and Shannon and Alyssa came to visit us. Also nurse Sylvia and a new found friend Madaline. And I have had numerous phone calls from people from my support group. Jen Bolen has been an angel, Stephanie Price thank you for your expertise...they are even faxing here in the hospital. I have not been able to check the web site, but there is lots of people praying...thanks for the support! I don't have computer access until Monday. My friend Scott is updating this for me. (sorry for any names spelled wrong!) Thank you for everyone for always signing his guestbook and for all of the support and prayers. We will be back home in no time! Oh I forgot...Jacob, we have been waiting for his urine culture to come back and to hopefully to show us he had either a bacteria or UTI, but everything was negative so we do not know why he cannot pee...so we don't know what is wrong. We do know that his G tube was hooked around his GJ tube so whenever he moved, it would pull it back close to his stomach and that is why his food backed up out of his stomach...so his was not intuscepted. So they say. He does have a large whited out spot in his upper left lung which is either a mucus plug or a collapse. They say it is hard to tell, and behind his heart in the lower left is aspiration phnemonia from when his food backed up. Other than that I will update on Monday and let you know how the rest of the weekend went.

Angela

Friday, October 15, 2004 2:13 PM CDT

WOW Thanks for all the prayers

Jacob is out of the coma but not out of the woods yet

He is on IV antibiotics...has a large mucus plug in upper left lobe of lung and aspiration pnemonia in lower left lung also

IGT showed that his g tube hook was grabbing his gj tube and bringing it into his stomach and thats how he aspirated from reflux

He is still cathed and not peeing on his own

Im fighting them to feed him.,..we know how crutial this is for our little guys

Im giving him vivonex tonihgt slowly

lots of calls and visitors

thanks again
keep up the prayers

not back to baby bear yet but at least hes is awake

angela

Wednesday, October 13, 2004 6:50 PM

*********************************
UPDATE
We are in Toronto sick kids
Jacobs basically in a coma
they cathed him and are getting iv started
please pray for my baby
Im so scared
Ange
***********************************

Prayers are needed again please...

It seems Jacob may be intususepted again (sp?) I always spell that wrong! Almost everything that has gone into his gj since noon has come back out his g tube? Same color and everything. UGH... please pray that this will unkink itself by morning or we are heading to sick kids in the AM. Im worried that he wont be getting any hydration over night? Last time this happened through the evening we had to go to our local hosp till am and they put in a IV and was 3 hours poking and 4 nurses. 10 tries even in his
forehead. I really dont want to do that to him again.

Im scared for my baby!

Sick Kids finally called me back. And nurse Tiffany.
She thinks that he will be fine with pedialyte flushes till tomorrow morning. I keep forgetting that he is not a baby anymore and will not dehydrate as fast as he used to. I really dont wanna take him to Ptbo hosp. cause of flus outbreaks and just the chance that he catches something. Taking him to 1 hospital is enough of a worry but to take him to 2 would be asking for trouble.
Ill give him flushes through the night everyhour till am...
So no sleep for mommie. Hey Im used to it and who could sleep with you baby sick?
She said even will his blockage he will absorb some of it at least.
Toronto said they cant do anything till the am. I know that from prior experiences. This was sopossed to not happen after he was 1 year old. We have been blessed so far since May I think since his last one. He had about 7 before though. I know hes gonna need prayers especially for tomorrow, it hurts him so bad when they change them and its so hard to watch.

Thanks for the prayers and Ill update when I can k...
Hugs to everyone..
Angela
Updated at top

Tuesday, October 12, 2004 4:25 PM CDT

Sorry I havent updated in a week! Hope everyone had a great Thanksgiving! We sure did!
I am trying to get all Jacobs pics off his website so I can upload new ones? And it wont update? Anyone else having trouble with Caring Bridge?
Im gonne email then and see if they can figure it out? Havent ran into this trouble before.

This last week Jacob has been really well. We just got his AFO's and they fit great! We have a new beanbag chair that Jacob does so good sitting up in. Watching his Wiggles on! Hes been so great!

We spent Thanksgiving at my moms and had a great time. Had Jacob sitting up in front of the fireplace and took pics cant wait to show you them. Really we have been doing so well lately. Not much to update.

Thanks for all the prayers and Happy Thanksgiving wishes.

Hope everyone is doing well also!

Ill update more in a bit I have to get supper for Alyssa and Jacob wants his mommies attention!

I have a great poem from a friend Scott. He wrote it just for Jacob. When I can update the page and take the pics off Ill put it up for you all to read. Its perfect! Thanks again Scott!

Angela

Tuesday, October 5, 2004 5:30 PM

Seems as though my pics were stollen again. So they are gone until the 12th again. Please if you want pics of Jacob send me and email with your addy Id gladly send you some. Dont steal! Save to your comp first then use them...please...and if its just the graphics....the same you need to save to your comp first! Come on this is getting out of hand. I dont know how to fix this problem..... Thanks

Well Im feeling a bit better! Unfortunately Jacob is not!

He didnt sleep well last night at all. Took him a long time to fall asleep last night and then he woke about 4 am and didn't go back to sleep. Nodded off and on most of the night. This morning he sounded a little better. But his stomach bag (g-tube) drained quite a bit of bile out of it? Not sure why. Last time this was happening it was an intesusception. Blockage of his intestines. He is not pooping like he should be. Also his nurse thought that he looked really jaundice today? She thinks or suggested that his liver is not functioning very well? Gesh I pray that is not happening. So far though the drainage has settled down. Im praying that it stops again and we will not need to go to Toronto. His heart rate has also come down. His fever broke. His secretions has slowed also but are still pretty thick. He didnt sleep for long for his afternoon nap. I thought he would because he didnt sleep long last night. Hope I can give a better update tomorrow!

I have amazing news. Alicia my neighbor...well she is heaven sent!!! Can you believe that she has a lower 3 bedroom apt in my complex and has willingly said she wants to switch with me??? OMGosh!!! I can't believe it. She has a 2 year old and a 4 month old. So the stairs are gonna be a pain for her too. But she really wants to switch with me to make it easier for me and Jacob. I am so blessed and thankful! I can now have a hospital type set up for him in the livingroom with his crib. Then wheel it to our room at night. And I can sleep in my own bed again. WOW I am so excited. It'll be in the next few weeks before the snow comes. She even is moving all her stuff to an open 2 bedroom upper for a few weeks to get her place cleaned, then Ill move into hers, then clean this one, and she'll move into here. Thats alot to do. SO wish us luck we are gonna need it! Alicia thanks with all my heart. Life is going to be so much easier. For you to do this is just amazing. I honestly cant thank you enough. Love yah girl and bless your heart~

Mom and dad are still really sick. So please continue to pray for them. Thanks
Oh my dear sweet Tiffany is sick too! So pray and hound heaven that she gets better soon! We miss her sooo much

Angela

Monday, October 4, 2004 2:00 PM

Please continue to pray for little bear!

He and I are sooo sick right now :(

It really hit him extra hard today. Im praying this is the worst its gonna get. His secretions are so so so thick. Man poor guy trying to clear him himself. Im doing neb ventilin treatments bled through his bi-pap 4x a day, increased his fluids, through flushes, coughing him as often as needed. Doing agressive CPT regularly. His heart rate is 190 usually its only 110 - 120. Hes sneezing and wheezing, trying to cough. Fussy and feverish. Poor guy. He is so nasal and plugged.

Im sick too. Could hardly do a thing and whats the hardest is Im the only one who can care for Jacob. Im trying to rest when he rests. I am thankful that hes not needing too much mommie time. We just cuddle under blankets and its so nice cause hes such an angel. Never complains too much. Just lets me do what I need to do for him. I love him sooo much.

Thanks for the prayers. Please say an extra prayer for Sweet Eli today. His parents Chad and Anne could really use them. Eli is not so great right now. Thanks
Angela

Sunday, October 3, 2004 10:17 AM

UGH Im sooo sick.....

Man it hit me Sat. afternoon...literally thank God the toilet is right beside the tub....ugh PRAY this is not what Jacob is getting. He's awful, now I am, Alyssas been sick for 2 weeks, mom and dad have the flu and havent been here
all week. Im completely alone. NOTHING is worse than being stuck in the bathroom and Jacob is alarming and I couldnt run down...HEART WRENCHING!

Please pray I/we get through the rest of this weekend till MON am whenhis nurse comes and I can catch up on sleep and hopefully get better :(

Friday Jacob had a pretty good day. Saturday Shannon came to pick up Alyssa and take her to her dance for me. I could hardly even get off the couch later in the afternoon. Dont know what I have but I have been lucky enough to not get sick caring for Jacob. Now I dont know how well I can do all this. Its hard. I just wanna sleep and lay around. I have NO energy. Poor Jacob is fussy and choking all the time on his secretions. They are sooo thick.
Didn't do much of anything yerterday. Alyssas been good and helping out here and there. Update more in the next few days. I cant wait till Jacobs nurse comes tomorrow so I can have a nap in my bed. Havent been in a bed for MONTHS. I think a nice rest in a nice bed would do me some good.

Hugs and prayers

Ange

Thursday, September 30, 2004 2:13 PM

Hello...Jacob has been better yesterday and today. He is still more fussy than usual, and needing more TLC...Im always ready for that! Overall though he seems to be better. His 02 is hovering lower than Id like lately again and his secretions are thicker again. Heart rate has finally come down.

I have tons to update this may be long so please bear with me. I get going and ranting and am all over the place.

First I'd like to ask for prayers for my parents. They are both pretty sick now, moms worse with a bad cough and head cold, dads more nasal. But that means that mom cant come up and help and see Jacob and get her daily fix. She literally cant sleep without seeing him everyday. So she hasnt been sleeping now either.

I just today took my first antidepressant. I have had them since....Dec 11th the script was wrote. So as you can tell I've been debating over them. I just started them because I just cant seem to get off the couch. I'm tired all the time, cant sleep great, feel crappy. So I thought I'd finally give em a try.

Nursing is still going pretty good. Getting more and more done! Yesterday was pretty busy! Got Alyssa off to school then Jacobs nurse came, had a shower, got groceries and did some running around, came home and the nurse left. Then I had a Naturopathic Doctor come! She seems great and really knowledgeable! I'm just learning about these alternative therapies so I'll let you know more about it as I absorb it all! Then Jacobs dad came for a visit, and Alyssa went to church, a kids club at night! Had some great cuddles with Jacob, she came home and got them to bed, well Jacob to the couch and his cushion! Finally had some me time and got back to some of my 100's of emails! I cant reply to some people? Not sure why? So if you dont hear back know that I tried to. Kim from Angels of Hope! I tried to email you back and it wont send? I got the Dorothy the Dinasaur (Wiggles) and she is awsome! Jacob loves it. And yes ALyssa is into Barbies...barbie freak!

I have been looking into some clincal trial info regarding some drugs that seems to be helping type 1 kids. Thanks PAT! We are really hopeful about these drugs. SOme of the type 1s can now move, roll over and use their hands and stuff. OMG could you imagine??? Well Ive contacted Toronto Sick Kids 100's of times and it seems they may be starting them in the upcoming weeks. And said of course Jacob is on the list of kids to try them... I think it involves a month pre stay to see all his symptoms and stuff first! Sure you bet! Anything to get involved in these trials. Can you imagine Jacob being one of the kids to test these drugs and it end up being the ONE the cure??? WOW I couldnt even imagine... So look for more updates there too.

I may be moving this month? Will let you know more on that soon too!

Had OT here today and looks like we figured out a great new setup for when we move to a lower apt. Jacobs bedroom will now be a computer room! Lets face it, I just couldnt stand being seperated from him. And his crib is on wheels so my old computer part of the living room will now become the 'hospital' part and his crib will be wheeled inthere for the day and make my back and just life overall easier, and at night wheeled into MY room!! Can you imagine? Sleepign in a bed again! WOW I cant wait. Sounds too good to be true. See, all his machines are on a cart with wheels too so that would just be awsome! Cant wait!

Gotta go hes yelling at me to pay attention to him! Little bugger!

Thanks for the prayers...hes doing so much better. Bounces right back from his little episodes eh! Hugs and prayers!
Angela

Tuesday, September 28, 2004 9:30 PM

Right back into reality.......

WOW you get so comfortable with everything and then a crash happens and wham...right back into reality.

Jacob woke up with a small fever, sounding junky in his right lung, I thought it was more nasal or in his throat. My nurse came at 9 and listened also and thought he sounded pretty junky too. So I did his physio, CPT, and a neb treatment through bi-pap and he seemed better. He was really fussy so I laid him on the floor and still really fussy. Was pretty upset so I thought I'd put him in his bouncy seat (lays pretty flat. He hasnt been in it in a bit and thougth it might make him happy. And he is more upright and he was all happy watching his Wiggles. We both thought he was great. Smiling, his face lightened, seemed so happy, looking all around and smiling. Then he started to fuss more and more. I lifted his shirt to check his tubes and his belly looked kinda squished. So I lifted
his back to put another pillow under it to arch him more. Well, then I think a plug moved or formed or something. His heart just plummited. Dropped to nothing. 02 dropped to nothing. He went grey, white, blue, then his eyes rolled back in his head. Thats when I freaked. I get so scared. I think this is it...I panick. I took his feeding tube off and ran to the couch with him...coughed and coughed and coughed...suctioned and suctioned. Coughed and coughed. NOTHING. I thought this was it again. God please help me I was thinking. I was shaking. I put pappy on and suctioned deeper. Really deep. Got some more stuff out. His color started to come back his 02 and heart rised.

He went right to sleep after. This was about 11 Am and he slept until 3:30 PM and then he just woke up. Like nothing ever happened? But man does a crash ever poop him out. All in all it lasted about 10 minutes, but, it felt like an hour.
Does that ever make reality come back fast. You get so comfy and think hes 'all better'. Not, SMA is such a monster. Hits you when you've got your guard down. I feel awful. Maybe I pushed him too much. Making him do too much. I'm gonna take it easy with him and postions this week now. Man that sucked...:(

I HATE SMA have I told you that lately...

Ange

Monday, September 27, 2004 10:20 PM

My baby said mama for the second time ever yesterday!!!!

The reason Im sooo happy is because while he is losing his facial movements, he has lost most of his smile and his sounds :(
BUT yesterday I had him up on my shoulder....(such an awsome feeling...So grateful he can do this for about 5 minutes...) I was rubbing his back and massaging him and he was in heaven. He was talking away and laughing while I poked his ever so flat back and rubbed him and just sat holding my baby. I cant express how awsome that feels no matter how many times I have done it now. It is just such a blessed feeling. I am sooo thankful that Jacob can even handle it now. He was cooing and awing, then clear as day he said mama, mama, mama, mama... YEAH!!!

I will forever cherish that moment.

When I laid him back down on the couch from my shoulder he was just all smiles, mostly with his eyes, they squint up
in the corners and his cheeks rise a bit and he just looks at me with this look, like "thanks mom".

I just love my son so much, more than words can say. He is so happy, so grateful for every little thing I do for him.

We went for our walk yesterday also, I LOVE THAT STROLLER, we walked to the corner Tim Hortons. Mom, Alyssa, Jacob and I, and every tree we went under his eyes lit up. I think he remembers being under the maple tree at moms when we were there in the summer. Well a few weeks ago anyway! So I stopped at everyone of them and let him see the sunshine coming through. He just looks up at them with the widest eyes, such wonder and amazement in those sweet innocent eyes. He loves being outside. Loves the noises and the smells, the wind doesnt even bother him too much. He just enjoys the time and never makes a peep. Just smiles up at you every so often to see if you will look at what he shows you with his eyes. He will look at something, then look at you, then look back. When you look at what he is showing you, oh, if you could see the smile and see the expression. Its like an acheivement for him to get you to see it or something. Ugh I love him so...

Every big truck that went by his eyes lit up again, and you can see the amazement in his eyes. He is experiencing everything for the first time. Just even a bird flying by he has never seen that before. Everything he sees and experiences is a miracle and a day that we have been blessed to have and so grateful to have been given. We dont go out much (Im too scared of germs) But when we do he just LOVES the outdoors.

Im so proud to be his mother. Such a journey it has been and God willing it will continue for many many more YEARS to come. God is good and we are truly blessed in sooo many ways. I couldn't tell you. Spiritually, emotionally, finacially, everyone of you reading this is one more person that is helping. Just knowing someone out there cares and is reading this and listening makes this journey and journal, and fight worth it. Just to see my sons eyes light up to something new is worth it. Just to see a smile on an innocent childs face, who was dealt a death sentance at birth...and continues to fight daily, to fight for his breath, his life daily, is worth it. He never complains, well, (when Im infront of his DVD the Wiggles he lets me know he want me out of his way!!!) but really other then that, he lets me suction his throat and mouth, lets me dress his tube sites on his belly daily, lets me pick his nose! LOL I have to!!! Lets me place his pappy (breathing machine) on his nose, lets me cough him, do agressive CPT on him, lets me place him where ever fits me best at the time, never ever complains. Just smiles knowing I am with him and always near him. Always with him. Always a footstep away from him. He is sooo smart. Anyone that meets him will tell you that. He is so handsome, with eyes that peirce your soul. He is my everything. My angel. My son...

I took a nice picture of Jacob the other day, looking up at the trees, wearing his toque and bright yellow sweater, its gonna be a beauty, cant wait to show yah!

Hugs to all the sick ones right now...man its not even October and in our SMA community we have sooo many sick little and BIG ones with SMA that need prayers.

Thanks for listening to my happy day!

Oh I see many of you are wondering how Alyssa is doing in school? Well lemme say that shes BORED!!! She is in a split class, not sure if I told yah all this yet or not? But they had too many kids so the class is split 1/2 and 2/3. Well lets say that the work shes doing is less than grade 1 work. SHes bored and she now does homework afterschool everyday and I add some here and there. She is really really smart and intellegent and its a fight to keep her mind busy. She can read ANYTHING and sometimes thats a problem! But her cold/cough is better and shes feeling great. Started her Jazz/Hip/Hop classes again. I wanted to start her in Brownies but forgot to sign her up so Im gonna look into that tomorrow. Thanks for asking and checking up on us!
Hugs and prayers to all our Florida freinds...

Angela

Wednesday, September 22, 2004 5:05 PM CDT

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
My heart just saddens to inform you that in the last two days we have lost 3 beautiful children to SMA type 1. Linnea Grace, Riley, and Allison, are all angels now free of SMA and its horrific complications. Fly free with wings now sweet children, enjoy the freedom and run and play with all the other angels. My prayers are with all the families....
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Soo sooo sooooo sorry for not updating in so long. We have had a real busy week so far.

First Jacob is OK! Thanks for the flood of emails wondering how he is doing. He was getting sick and I thought OMG this is gonna really suck, I had no idea how he would do with his first cold. Well he managed to ward it off himself before he got bad! Such a little fighter. I am thankful for all the prayers. You guys are the best.

Well we spent lots of time outside over the last week. The weather is nicer now that fall is here then when summer was here. What a week we have had. Tiffany came down over the weekend on Saturday to let me go to an awsome huge clothing sale with gentle used clothes. Everything is like 2-3 bucks. We got like a garbage bag full of stuff for the kids for about 130 dollars. Then we walked up to Wendys for lunch and then to the mall. Jacob loved the walk and really enjoys looking around at all the cars and stuff.

Tiffany spoiled him with Old Navy stuff again We dont have an Old Navy here and I love those cloths so she gets stuff for Jacob. I love all the new stuff she got for him. Thanks Tiff. Shes gonna be here Friday!!!

The rest of the weekend was nice. Mom still comes here almost everyday to get her Jacob fix. Dad does too!!! Jacobs Aunt Kara came over last night for a coffee and it was nice to see her again.

Well I have been busy buying a VAN!!! Its awsome. Remember the Garretts who did Jacobs Country Gospel Concert? Well it was their van. Cherry Red and such a great deal. They even got a ramp built for his stroller. Now its sooo easy to get out and about. Jacob loved being in it. Im so blessesd to have such wonderful people in my life. They have done so much for Jacob and my family. I love the van guys thanks so much.

Yesterday was real real busy. Jacob had an appointment at Five Counties again. His physio place. Well they casted his feet and calves for his AFOs. Ankle Foot Orthos. His feet are contracted. I wanted Knee Immoblizers and wrist splints too but they think his knees and wrists are fine. I also visited with his speech pathologist and unfortunately she does not feel that she could benefit Jacob much. So Im on the hunt for someone who feels that Jacob should learn to talk and could benefit such things as speech. The moms in my support group say their kids are in speech from about 6 months and of course many many dont talk (type 1s) but they can understand you and you can talk with them. And learn to communicate with each other. If anyone has any ideas Id love to hear from you and just email me k! Then we went to his peads appointment. OMG it felt like forever since we have been there. Believe me Im not complaining that means that Jacob has been great to not need to go there. Again Im very blessed with good health for Jacob in the last few months. He could not believe how well Jacob looked and was doing. A day I never thought we would see was his first birthday and the months keep rolling by. Now its thirteen months!
Jacob got a needle and then his pecker pulled! Now what I mean by that is Jacobs head- keeps adhearing to the skin under it so it looks like his rim is not there. Well He has ot keep pulling it apart and man this time Jacob is really sore with it. I keep it vasalened and everything but also his feet are really sore today from all the stretching yesterday too. If I lift his bum to change him from his feet like you normally do he cries out in pain. Makes changing difficult but Im keeping him up with advil for it. Overall he is in almost perfect health!!!

Now we weighed him again. Mind you the last time he was weighed I think he was 9.8 kilos. And that was on a baby scale that he layed on. Well he is so long now that he is just too big for it so I layed stood on the standup one then held him, and we weighed him. Well it said he was 9.3? So that would mean he has lost weight over 5 months?? I was worried cause to me he looks like hes gaining great. By far still a liitle porker. Mind you he has lost all his neck, and back and shoulder muscles so his chest looks skinny. But he expalined that as he loses his muscle his weight will go down. So hes getting more fat and bigger but muscle weighs more so he on paper looks like hes lost? And it was a different scale and you have to take that in effect. Im a little worried but trying not to be... You know me though.

Nursing has been going great. I have a new core nurse now and she is awsome. Been with us almost 1.5 months I think. Shes doing excellent and we talk all the time. Shes like a sponge and wants to learn so much about SMA that is always nice. I dont really have much else to talk about so its good that she is sooo interested. I have been able to get out and about more now with her. Shes awsome we have a great schedule worked out!

K I have to get back to baby bear! Thanks for all the emails and always signing Jacobs guestbook to let us know you were here! Hugs and kisses
Angela

Friday, September 17, 2004 6:32 PM CDT

I just added his Sears photos...he is grumpy right now so Ill add captions and tell you about them later...
See the one of him peeing!!! It was so funny!
Update soon after he is sleeping...he is rough right now..
Ange

Tuesday, September 14, 2004 5:45 PM

What a beautiful weekend we had eh! It was so nice out. On Saturday mom came and picked me and the kids up to go to her house for the afternoon. Alyssa went swimming all day in her pool! How she manages to get into that pool when it has been so cold and swim all day in it is beyond me! I couldnt! Shes like a little fish! Jacob spent the day on the swing underneath the maple tree. I set up his DVD player with the Wiggles and he just loved it outside. He had his nap and everything under it. He loves it when Buddy (moms yellow lab) comes over and sniffs him and licks him. We had steaks on the new BBQ mom bought. It was just a beautiful, sunny, perfect afternoon!

Then on Sunday it was even nicer out. So I got mom to bring up Jacobs stroller and I set it all up around noon and then spent all day Sunday outside. I had LOTS of sunscreen on him. He feel asleep in the stroller. We walked up the street to Tim Hortons then to the store later. Jacobs eyes light up everytime a big loud truck goes by. Wondering what that loud noise is. He started to really sweat as not much air gets in through the canopy so I set us up in the shade while he slept and figured he was ok. About 6 we went inside. These two days outside is unusual for Jacob. Later when I was getting them ready for bed. Jacobs eyes looked like a raccoon but RED. Watering and puffy. So I gave him another bath and flushed them out. He was pooped from all the fresh air. Monday morning they were even worse. Turns out his precious eyes were sunburnt around the lids and right under. Also his head had the strap marks for his pappy. So when he was sleeping in the shade well I guess it wasnt that shaded. My poor baby got his first sunburn. I felt awful. Its sooo much better today. My nurse had some great stuff in her purse to put onit and it helped right away.

I have had a nurse Mon, and today from 9-1:30. Got a bit done yesterday. Had lots on my mind last night and couldnt sleep so I laid down for an hour when she got here today. She said she didnt have the heart to wake me up and just let me sleep. I didnt wake up till noon!!! Much needed rest I guess.

Alyssa is doing great at school. After I went to the school and worked out a few bugs that were bothering me it seems that she is settled and happy in her class. Awsome. I like her teacher. She is going to keep me updated with what illnesses are going around the school. Also if Alyssa seems to have something on her mind she will try to talk or send her to talk to the social worker. Also keep me informed and make the decisions as to what to do.

Gotta run. I have to get supper.

We might be going to Toronto on Fri to see Jisele and so Sick Kids to talk about a vent for Jacob. Ill let you know more about the vent int he next entry. I gotta get going.

Hugs and Prayers

Angela

Friday, September 10, 2004 6:31 PM

~~~~~~~New photos added up higher~~~~~~~

Well the nursing has been pretty good this week. I have had our newer nurse everyday from 8 or 9 am until about 1 pm. So I am able to get Alyssa to school if she wants me to drive her...get a coffee on the way back and then have a shower...clean up a bit..do things I need to do then come home she goes and I can have a nap with Jacob. Then Alyssa gets home from school. This schedule is working awsome. If only I could stop talking to her and yacking and then do stuff :) Oh well at least I can do things If I want to eh!

I knew it was gonna happen. I just didn't think it was gonna happen in the first four days of school. Alyssa seems to have gotten sick already. Im not sure how bad she will get and I hope that she doesnt pass it on to Jacob. I cant believe that it happened already. Please pray that Jacob does not get sick. I just dont know if he will survive another illness. Please the prayers will be grateful.

Not only is Alyssa sick but Tiffany is sick and I cant wait till she is better because I miss her already. Also Jacobs dad is sick. Whats up its the first week of September. Not cold and flu season yet. I hate to think what winter will bring.

Jacob been doing pretty well. His g-tube site is a little infected so I have been doing saline treatments and soaking it 2-3x a day and using polysporin and bandaging it up. I hope that it heals up quick. Also he has diareaha pretty bad also. So maybe hes getting something. I hope and pray not. It has been so long since he has been sick. I will go back into my entries to see the last admittance into sick kids or his last time sick besides bowel issues. Its been rreally long time now...God is good ... Thank you Lord.

Gotta run. Check out the new photos I added up higher.

Hugs and prayers.
Angela

Tuesday, September 7, 2004 10:15 AM

What a remarkable few days it has been. Saturday was Shannons birthday... HAPPY BIRTHDAY SHANNON!!! Shannon is my brothers girlfriend. She has helped me and Jacob in the past emensly! We went to my moms on Saturday. Dan (my brother) Had a birthday party for her there. Lots of their friends came. We had Jacob outside enjoying the fresh air. Alyssa went swimming all day. My Aunt Sandy and Uncle John came by also and got to spend alot of time with Jacob.

Mom got to hold Jacob up on her shoulder. She was lucky number 2 that got to. She did NOT want to put him down. She felt the same way I felt when I held him up there for the first time. We were both in tears holding him up like that. He loved it. He just loves all the new things we are able to do with him. And I am so thankful that we are able to do these things with Jacob. Most type 1 kids are not able to handle ANY incline at all. Jacob was like that for quite awhile. These are baby steps, but steps none the less. Jacob still will never be able to go into a car seat for any length of time though. Its just too risky for his breathing to be compromised. AND thats when MANY children have come into complications in the past. He can tolorate being on my shoulder for a few minutes at max. I dont want to push him and run into trouble so dont worry.

I have been giving Jacob small tastes of food on his soother and when I say that I mean things like juice, and his baby food when Im making his cocktail everyday, say if I have Rotini or spaghetti, Ill let him taste the sauce. Things like that. I would NEVER put actual hard food in his mouth...lol I got some emails questioning that. No worries I am doing this slow. Jacob will never be able to eat again or chew stuff, but its nice to see him enjoying the tastes now and then.

Yesterday was a very special birthday. Angel Jaimes birthday! I have had the pleasure of knowing Jaime and her parents, Krista and Janne since prior to Jaimes diagnosis. Jaime Olivia Haapalainen, September 6, 2003 --- Feburary 1, 2004. Krista and I have became pretty close. I am praying for you both that yesterday as hard as it was had some peace knowing that Jaime is now free of SMA and doing all the things in heaven that she couldnt do here on earth. My thoughts are with you both. Please know that I concider you both friends for life, SMA may be a horrible, monster but we all have the most precious angels because of it. And we do not let it destroy our faith... SMA makes us stronger and become better people because of it. Our angels are so special and precious. My heart is with you both! LUV yah all!
Please visit Jaimes site and sign her guestbook. Krista just finished it and it is a beautiful site and honor for her daughter.

Also another DEAR DEAR friend of mine has finished her SMA angels site. Jisele picked out an awsome and beautiful site for her son. Jisele and her husband Condan are amazing people with huge huge hearts. Dear Bretton also fought the battle with SMA...only Jisele did not know until 5 months after Bretton passed that that was what he had. Please visit her sons site also and read her story and sign his guestbook. Bretton Macleod November 5, 2002 -- September 26, 2003. All these angels are special. I love yah Jisele and cant wait until next week when we may finally meet in Toronto.

Well I wanted to thank you all for all the prayers and thoughts and always signing Jacobs guestbook. Thanks so much for being there for all of us. And especially thank you for going to Jordans site and sending your prayers. He is getting better and is slowly making progress. Thank you so much.

Gotta get going...

Oh I have been having many nursing issues lately. My core nurse took a month leave of absense I think she is full time at the hospital and they get paid more there so I dont think Ill be seeing her anymore at all :( I am WAITING for new nurses to be hired by the agency then I can train them. I wanted all this to be done PRIOR to school starting and winter coming ever so near. Thank heavens for Tiffany when she comes. So its hard to get anything done and really limits what I am able to do even around the house.

Jacob yesterday had a slightly higher temp than normal and needed to be suctioned a few times and had a couple of those vaso vagal things. Today he was up really really early and Alyssa was too. It was her first day of school. You would think it was Christmas or something. So he is already down for his nap and Im hoping he can make it till tonight so he can go to bed at a decent time and I can have more ME time!!! Maybe be able to get on the comp more and sign and visit and catch up with friends. That would be nice but NOT realistic...lol

Anyway this is long enough for now. Hope all is well and Im happy to say that so far I have not heard of any of the people we know in Florida that had major damage or got hurt. Thank you Lord!!!

Angela

Friday, September 3, 2004 12:50 PM

*****Prayer request at bottom***

I have lots to update yet again!

On Wednesday Tiff got here and we got everything ready to go to Sears to get Jacobs '1' year portraits done. Mom came to help and see us get them done also. She drove with Alyssa and Tiff drove my car with me and Jacob in the back. Well I told mom that I wantted to get Jacobs pics done with angel wings. So she went out to try to find some a few days earlier. She got two sets and the were really big and didnt know if the would work but hey we thought we would try. Well when we got to Sears it was 2 and as we were setting up his stroller with all his machines my Aunt Sandy was there also and a few others that we know. It was funny running into so many people!!! Anyway we get into Sears and locate the elevator and get upstairs. As soon as we walked in there was Jen and Carrie waiting for us. They blocked off all those appts for that afternoon for us so we had a big time slot to get lots of pics and let Jacob go at his own pace!!! The are awsome girls. Then Carrie pulls out some angel wings that were PERFECT!!! The were just perfect! And she had little angel teddy bears also. OMG thanks Carrie those wings were perfect. She used them on her daughters pictures and brought them from home for us. Talk about nice!~~~~

Well we got all Jacobs equipment set up in the room beside the little seat thing where he was and the girls worked hard getting all the props ready. The first pose was of Jacob and the teddy bears... You can see 3 of the poses in the proof that is up above! It turned out great. Then we did Jacob with Greg his wiggle doll! THAT one is my favorite. I love it so much. Then we stripped Jacob down to get some nude ones of him with the angel wings. Because of Jacobs tubes in his belly and not wanting his winker to show we thought that just a white blanket would be ok for covering him up. Well the very first photo...OMG listen to this..... HA HA HA HA HA HA HA!!! He is sitting there and Tiff proped him up higher so we could see his face better. Well we were all jumping around and acting silly... I jumped in front of him and they think I scared him well he got this look on his face. Kinda a cocky grin...and she takes the photo..and we see him with this yellow puddle running all down the front of the white blanket!!! LOL Oh dear we were all in stitches I had tears I was crying so bad!!! It was so funny. So we got a copy of that pic to remember always.. The look on his face was priceless. Then we got more of him with his angel wings and him on his side..and the wing sorta covering him. It was beautifull.
Then I wanted one of me holding him again. And Tiff said to put him up on my shoulder. Well Im telling you that it has been about 8 months since I have held my baby up on my shoulder. 8 MONTHS! I have said over and over that I would give anything to hold my baby up on my shoulder again and rub his back and hold him and cradle him. Well we did it. It took me and her and mom to get him up there but it felt sooooooo good. I was crying, mom and her sister Sandy were and Tiff had tears and Jen and Carrie...we were all a bunch of babies!!! But seriously now...I cant tell you in words the feeling I felt holding my big boy up on my shoulder. What a blessing it was. WOW! SO we took a bunch of shots again and then had to go and make our choices. Jacob did so well he only needed to be suctioned a few times. He was so tired also and almost fell asleep through it. He is such a perfectly behaved sweet little angel. I cant wait to show you the pics. The all turned out so good and memories to last a lifetime. Thanks girls.

I spent way too much money again!!!

Anyway so every since getting them done I want to hold Jacob like that all the time. I know he cant for too long but I talked with other moms and they said to do it. Some of the type 1 kids can tolorate it for periods of time and it is so worth every second you can get to hold him. SO I did again last night. I had to do it in the mirror in the bathroom to get him up like that b/c you have to look at his neck position and his face and throat, and watch his tubes and arms... Its like holding and moulding a wet noodle on your chest. But I love it and will totally do it more often. I did it agian today after his bath. Walked around the house letting him see things upright instead of from a side postiion. He talked and cooed and laughed and loved his new VEIW of the world. OMG wow I cant believe I am getting to hold my angel on my shoulder and cradle him and cuddle him. What a miracle.

I also talked with the doctor in New Jersey and other moms and have decided to give Jacob 'tastes' of food on his soother and little tastes in his mouth. Not food, like hard food...but any sauces we use or ice cream or juice or baby food. We started last night. I was drinking five alive and lol lol lol I put a drop in his mouth and lol his face was squished up it was so funny. He was sputtering and spitting it out. Man I needed to suction him out alot after that. His secretions were a plenty. But the doctor and the other moms said to keep the suction handy and let him taste things. Let him enjoy the things we do. So Im starting slow and keeping the suction handy!!!

I feel so blessed to be able to say how well my baby boy is doing! He has fought so hard to be able to be here today. And to think last Jan 9 I was told that he probably wouldnt be here to see his first birthday. NOT ONLY is he here and it came and went...but he is by far the BEST he has ever been. Thank you Lord. I am blessed and have so many people praying and thinking of us. Thank you for all each and every prayer.

Ok I gotta get going and spoil my baby bear a little more!!!

Hugs to everyone and butterfly kisses.

PLEASE PRAY for all the families in florida. I know of several that are there sticking it out. Several SMA families also. Thanks...you are all in my prayers..

Please visit Jordan...he is in grave need of prayers now. I have been following his journey but havent been able to visit in quite a long time. He is really struggling and his mom Carrie could sure use the prayers and so could Jordan. Thanks I know you all that can will! Here is his link. Jordans Page

Angela

Wednesday, September 1, 2004 11:30 AM

So sorry I havent been able to update much over the last few weeks. I know you are all worried. Thanks for the emails and for always signing Jacobs guestbook!

Jacob has been remarkable! I couldn't be more proud of my little man. It's like a miracle. He is so much stronger than he has ever been. Moving his arms, feet a bit!!! He is not needing to be suctioned at all since his birthday... His secreations are perfect. He spits them out all on his own. Has NOT CRASHED at all ever not once, since his birthday. Its like a little birthday present from Jacob. His fever has not been back, his bowel movements are perfect. He is talking away by the minute. What an attitude he has developed. Fuss's till the Wiggles are on for him. If your in his way he gets really mad at you. Laughs out loud at so much stuff. Always is asking for a bath or his pappy!

Other mothers of older SMA children kept telling me that the first year is the hardest and after that they seem to get better or plateau. Well that couldn't be more true of my angel. I cant honestly tell you all enough how much I thank all of you for all your support and love you give my little bear and his family. Jacob is truly an angel and such a beautiful little boy. He is so big now. I cant wait to find out how much he weighs now. The other moms were right. The first year was the hardest and I honestly cant believe how well Jacob is doing. I am taking every single minute that he is doing well and cherishing them all. Making many many wonderful memories with him and Alyssa. I feel so honoured to be his mother. If it were not for SMA support... www.smasupport.com I wouldnt have my little bear here with me today. All the expert mothers who have gone down this path before us have made it possible for us to know how to manage SMA children. I love them all so much.

Please pray for all the families I know in Florida that may have to brave another hurricane. Kristi I hope you all get out safe and the storm spares your homes. I pray it changes its course. Ill be praying for you all. Keep me posted k.

Another angel earned her wings in the SMA community. I dont know who she was but none the less she fought her battle with SMA and it hurts just to know that another child has gone home. That family will be in my prayers.

We are getting our pictures done at Sears today with Jen and Carrie. I cant wait. I know they will do such a great job. Cant wait to see you girls again.
Tiffany is coming today. SHe will be here any minute. I should go tend to my little bear now.

Thanks again for all the love and support you give my family!!

I will TRY to get around and sign some of our friends guestbooks soon I promise. I havent even been able to update Jacobs site.

Oh my mom and dad bought Jacob a Wiggle baby! Its Jeff and he is Jacobs first doll! He sings and talks and Jacob thinks the world of him! I love it. Thanks mom and dad.

Yesterday Jacobs dad came and Jacobs hugs balloon from his party we decided to write a message on it b/c the hellium was getting low. Well I wrote Jacobs name and disease and his website and my email and to PRAY for a CURE!!! It was such a big balloon I didnt think it would soar away> Well it did. So I took pics Ill add them when my comps fixed. I cant upload pics again. UGH! Anyway...

Dillion..aka boogie Im glad your home from the hospital. I hope your feeling better. And sweet little Eli is feeling better also. Ann you and Chad and your family are always in my prayers.

Hugs to all

Angela

Thursday, August 26, 2004 6:21 PM

ADDED NEW BLACK AND WHITE PHOTOS ABOVE!!!

Well let me try this again...

I am having such horrible computer problems...

I havent been able to update for almost a week. And of course it has to be one of the most important weeks of all...

Thats right I now am a proud mother of a 1 year old baby boy! Baby Jacob is no longer... That name will always be his name though. We all know that. I may start calling him little bear now. But baby bear just sticks with him.

Jacobs birthday was awsome. Friday was great just had a relaxing day with friends and family. My parents came up for a most of the day and Shannon. Jacobs dad came by too. He had many visitors and phone calls through out the day. My superintendant Carol and Manny thought up a great idea. While we were all upstairs talking and whatnot they were busy getting all the kids in my complex to sign a card and decorate the vestibule into our apartment. They had signs and balloons and a card and sang happy birthday to us. I wish I could post pics but for some reason I cant...

Then I cuddled with Jacob after everyone left. We had a nice time. Mom got him telling everyone he is one now. He holds his index finger up in the air when you ask him how old he is now. He will close his fist and try with all his might to just get that one little finger up all by itself. He does it over and over again. It is awsome. He has been moving his arms more and more all the time now.

On Saturday it was busy from the second we woke up to the very end of the day. Mom and dad came up here early to let me get ready and all of Jacobs stuff packed. Dad and Dan went to the Rock Haven early and to pick up the cake and take some of my stuff up for me. Shannon stayed and drove my car to take all the kids. We let alyssa take a few of her friends also. The party was starting at 1 in the after noon. When we got there it was like 5 to one and only 1 person was there. I was kinda worried that no one was going to come. Well gesh...no need to worry. About 100 people came throughout the afternoon. Most people kept their distance. We had hand washing as soon as you came in the door. Then a guestbook to sign. Balloons were donated from Costume King--or K&C Costumes...I actually forget now! I have to check on that. One balloon was/is as big as my window...huge with red krinkle paper holding it up and smaller balloons not helium holding it down. Jacobs eyes lit up when he saw that!!! We had all his photo albums spread out on tables and his magnets with his picture out for people to take one. I had his videos playing of him up until now.. Craft table for the younger kids. Plenty of food for everyone to eat. The cake was super... Just beautiful. I let Jacob squish his hand in some cake and man he didnt like that. He had a great day. Needed his pappy for most of it ofcourse. But everyone kept saying how happy he was and how big he was. He was about the same size as the two year olds there. Its nice to see the older kids around so I can see just how big he was. He was of course just the most well behaved little man there is. Never wimpered at all. Just when he was tired and needed a nap. Me and Tiffany made laps around the food table with him to get him to sleep. We had a big balloon release for all the angels to celebrate with us. The kids loved doing that.

So many people were there that meant alot to me. Krista and Janne I'm so glad that you made it. It meant alot to me. Thanks for coming. I hope you enjoyed yourself.

Erin from Bears Who Care came! Alyssa just loves you so much. She was most excited to know you were coming and I could tell from the big hug she gave you that she adores you.

Tiffany came and I love her so much.

Jennifer and Carrie came from Sears Portrait studio. They have helped with Jacobs fundraisers and I was so glad you could come. Thanks girls. OH we are getting our pics done on Wednesday! Ill call you in the morning to schedule a time. Tiffany is coming that day!!! Cant wait!

All my family came...

My Aunt Sandy gave Jacob the most beautiful teddy bear. It has real feathers on its back made into angel wings. I LOVE THIS BEAR!!! Thanks Sandy I love it...

NOw HUGE THANKS GOES OUT TO JASON AND DAWN WILKENS!!! Jason when I opened that picture you drew of Jacob... I was bawling. Everyone LOVED it. Jason has his own portrait studio where he hand draws faces or just people. IT looks so much like Jacob. It is something I will treasure forever and ever. I cant thank you enough. IT is beautiful Just beautiful. Jason you are so talented. Everyone took snapshots of it. Wow what can I say. Thank you both from the bottom of my heart.

Christine and Natalie--or Kelly ? LOL I forget sorry! Anyway two of the nurses I used to be in school went also. Christine gave me one of those Willow Trees. The one called Angel of Mine... I love it its perfect. I have never seen one before. Looks like I have something new to collect. I have always collected angels and teddybears.
Thanks girls. They are in the works of some fundraising from the nurses. Christine is bent and determined. How do you do it? I envy you girl!

SO many people to thank.

Jacobs dad was there with some of his friends. Im glad that they could make it. Aunt Kara came and brought Justice. Papa Bruce and Dale came also. Poor Dale had to work but they made it. Thanks everyone.

Jacob has been really really great lately. Hasnt been on pappy near as much as he has needed to. His fever broke Thurs and hasnt made an appearance again. His secreations are starting to thin. It went from a size 8 suction cath to a size 10 to a size 12 then to only a yanker woul suck them up... So a huge YEAH That they are thining!

I will try to post this. I have to get my comp fixed soon so you can all see the pics I got developed. I have some black and white ones from a camera that Kristi from the States sent me. And man eveyone of them are beautiful.

Thanks for all the birthday wishes and cards and ecards and emails and letters... I have kept every single thing we have ever gotten and we are going to be doing a huge scrapbook with it all. Well prob about 10 to fit it all in. Thanks everyone.

Pray this posts... Ill be so upset if it doesnt work...

Copying this now!

Angela

ADDED NEW BLACK AND WHITE PHOTOS ABOVE

Tuesday, August 24, 2004 5:43 PM CDT

testing2

Monday, August 23, 2004 12:58 PM

Promise later today is an update coming....

I have to get his pics from the party today. Then Ill update with pics. Promise. Jacob is doing well. Had a very busy weekend and lots of fun. I don't have a nurse again this week so time is short. When Jacob is on pappy and happy watching his wiggles after his nap Ill update then. Mom is coming later around 2 so when he is asleep on pappy I can slip out up the street to Walmart to get eh pics and a few groceries. Man I hope this nursing issue gets resolved soon. Its impossible to get anything done here.

So watch for it. Also I think Jacobs party is on the news tonight also at 6 and 11. Chex news...newswatch.

Angela

Friday, August 20, 2004 10: 15 AM

Happy first Birthday to my baby bear!

Jacob Daniel Procter-Trick!

Jacob mommie is so proud of you!!! You have overcome so many hurdles and obsticles to enjoy this day. What a year it has been! Filled with love, joy, saddness, anger, emotion, depression, happiness, honesty, realization, but most of all...blessings. I am so blessed, Jacob is so blessed to have the love and support that we have. Jacob has faught long and hard to get here. The whole time with a smile on his face.

Jacob you have taught me so much about life. About how to slow down, enjoy the very minutes of a day. I am honored to be your mother. Thank you for choosing me to fill this role. I only hope and pray that I have and can continue to do a great job. You are the happiest baby I have ever met. I sit for hours on end daily to watch you laugh, smile, coo, talk, play, sing, mostly I watch you sleep. For everything you go through on a daily basis you never complain. I learn from you everyday...and all the other sma angels here on earth and up in heaven. Its true...you are all angels. The most precious gorgeous, heavenly angels we get to call our children... Jacob thank you for being you.

My baby bear...my bobo...my angel I get to call my son.

Thank you to Betty lou. You were there so much for us over the phone and emailing prior to diagnosis.

Thank you to Laura. Not only for EVERYTHING you have done to help Jacob with equipment, his diet, but for always being there. With everything you have been through you always think of others and these angels. You are an earth angel by far. SMA support has been my world of support. If not for you I wouldnt have the support I needed and thank you for allowing us to have the ability to have sma supprt. You are amazing and I look up to you.

Carrie..you were one of the first moms to contact me after diagnosis. You phoned and emailed me and told me straight what I needed and needed now. Your an excellent mother...

Amy, Kristin, Lorraine, Kim, Tracy, Sallie, Annette, Andrea, Lora, Stacy...Laurie, Helen, Shaina...my mind is blank...to everyone else I missed...you all mean so much to me. You are all a part of my family now. And forever will remain in my heart and in my daily routine. SMA has brought us all together for a reason. SMA has forever changed our lives.

Thank you to everyone in my family and my friends and my community. I am overcome with joy and happiness on this day. And know that I am forever grateful for everything you have done for me.

Thank you to everyone here...Caring bridge has brought most of us together. Thank you for always signing Jacobs guestbook and offering prayers and support and encouragement. I love you all...

Mom I love you so much. You are more than my mother. My support, my shoulder, my angel, you are everything to me. I love you with all my heart mom. Thank you for always being there and here and everywhere... I love you more than I could ever write on here. Know you you are my world and I couldnt do this without you. Thank you mom....

Jacob enjoy your day sweetheart. You deserve it.

Mommie loves you soooo much. Words fail me to tell you how much.

Happy first birthday to my angel...I love you!

Ok..now a little update...

Jacob did not have a great day yesterday... he seems to be wincing still and sweaty and thick thick secretions. He is talking and playing and watching his movies. Had a good nap yesterday he did! And last night he went to sleep about midnight so I got to have some sleep. Alyssa woke us up early this morning.."mom get up...mom....its Jacobs birthday...mom...dont just lay there..." LOL What a girl. Youd think it was Christmas!
I went back to sleep cause Jacob was sleeping!

Jacob is so special and loved in this community that Chex news phoned this morning and want to do an interview of him for his birthday... Can you believe that? Jacob is so special that his birthday requires a television interview!!! And they are also wanting to come to the Rock Haven tomorrow and tape some clips of his party there! Oh Jacob if you ever know how much you are loved and adored!

Well mom and dad just got here so I have to go.
Hugs and prayers...

Angela

Wednesday, August 18, 2004 4:15 PM

New photos were added up top!!! Check them out...

Baby Bear is going to be 1 in '2' more days...what do you think of calling him little bear now? And then at '2' calling him big bear? I like baby bear so much but he is getting to be such a big boy now. Growing up so fast... Im so blessed to be able to see these changes in him. He looks like a little man now. I HAVE to go to Sears asap to get his '1' year old pictures done.

Well not much better news to update.

Last night Jacob had a really bad night. He crashed over and over again. His secretions are so thick. No matter how many flushes of extra water I give him they just are not thinning? He was pretty fussy and not even the Wiggles were cheering him up. Poor baby.

Mom and Dad came up last night to bring Jacobs Birthday gift for him. We got him his own DVD player!!! Yup thats right...he can now watch his Wiggles anywhere we go. And I can even have some t.v. time also. I cant wait till his birthday. Jacob will have so much fun. I hope someday I will be able to explain to him how much he is and always will be loved. So many people love him and support us. I am blessed to live in such a loving town. I cant thank everyone enough. Carol and her friend from back home came to visit Jacob also last night. So we were late getting off to bed. IT was about 10-1030 before I got to get him to sleep. He woke up at about 1 crying. He cried and cried. I couldnt do anything to get him to stop. He was just miserable. I hope just his teeth. I rocked him and talked to him and hummed to him. Even put the Wiggles on for him... NOthing soothed him. He was crying so much he was sobbing. Then when he settled a bit he couldnt stop sobbing... Poor guy. Then at 5:30 I thought ok..i have to do something here. I went to get him some codine to try to relax him a bit and when I came back he was dozing already.> He only slept a bit then woke back up again and was miserable again. I didnt get any sleep again. I have an awful headache. Mom and Dad came back up to do a bit of running around for me because my nurse is off sick again and now I dont have one until next week if she is better. Today he was fussy fussy fussy. He didnt go back to sleep until about 3 pm and is still sleeping. I hope that its just teeth and he will be better for his party. I want him to enjoy his memorable day. It is so special to me. This will and many many others be a day I will NEVER ever forget. Im so proud of him for all his fighting he has done to get to today. What an angel I have.

Please sign the guestbook and let us know you were here...

Thank you to everyone who has been sending gifts and birthday cards. They are going into the HUGE scrapbook I will be starting with all the mail Jacob has been getting.
Becky and Char we got the gifts you sent. Thanks so much and I hope that Becky is feeling better.... ILl bewaiting for an update when you get home from HSC

Jenn and Brad...I will forever hold you card near and dear to my heart. I loved the bear. Thanks for thinking of baby bear on your trip. I pray that Braden in one of the angels playing with Jacob daily. He holds a special place in my heart forever and ever. IF you ever want to talk please email me again. Hugs and love to you both.

Prayers always Angela and the kids

Tuesday, August 17, 2004 10:45 AM

~~~~~~~ADDING NEW PHOTOS UP HIGHER~~~~~~
CHECK THEM OUT

3 more days and its Jacobs birthday!!!

Sunday night was so relaxing and I had a great time. Papa Bruce and 'gama' Dale!!! (Thought you love that Dale!) came by with supper for me and the kids..well Alyssa, but you know! And we just cuddled with Jacob and had a nice nice visit and talk. Thanks guys it was nice to not have to worry about supper for once! Jacob did really well. We were going to be going to their house for supper but Jacob is just not Jacob lately. I was also really tired from being up so late Fri night with him in the hospital and all. He crashed a few times with them there. This may sound bad but when Jacob has his crashes infront of people at least they know what its like when that happenes. And lately it has been happening so often. Probably 10 times a day or more. Oh yeah...it happened at the hospital...just to give you an idea how scary it is...well the er doc looked at his alarms on their monitor...his heart rate drops, plumits down to almost nothing...shes like ummm his heart...then his mouth bubbles... and his 02 plummits also...she runs out of the room to the hall...yelling I need 02 now, stat...get 02 here now...they all come running and scrambling and hooking stuff up...they were getting the crash cart ready...I said whoa hold on...he needs his pappy...suction him, suction his throat...they do that and I found plugs and got pappy up and ready...they had 02 on him..and I get pappy on him and he is happier and better and breathing again. WOW talk about scary. If I hadnt been there they would have intubated him and had 02 on and everything. Shes like wow that was scary...REALLY? Well I do that all the time all day long...how do you think my heart is?

Anyway sorry about that...

Well I have been really depressed lately? Not even sure whats up? I think with Jacobs birthday coming up I have so many mixed emotions. I feel so blessed and happy that I get to share this day with my son but on the same hand I wonder if this is going to be our only one to share together. This is such a huge milestone for Jacob. The second of hopefully many. I love my son with all my heart and couldnt bear the thought of losing him. I sat and cried last night for hours and hours. MOst of the night. Stressed out to the max lately... I cant even imagine not being able to hold Jacob and cuddle him and have our little talks. His smell.....if I could only bottle them up forever. He has such a distinctive smell to him. His eyes tell such a sweet story. My baby is remarkable. He has taught me so much in his year. Why do our children need to suffer? Why do they have to go through this? I would take it all away if I could. IF I could do anything to change the way Jacob is...his outcome his pain, give him my muscles...do anything I would. I dont ever want to lose Jacob. And with everyday that goes by with summer it is only one day closer to winter coming. The days are getting colder again and its getting darker earlier. Alyssa will be going to school soon and thats scary also. Germs...germs...germs.

Jacob had a bad day yesterday...he was really upset in the morning and when the nurse got here he wasnt much better? His temp is still up and now hes not pooping enough..ugh it never ends. He never, well almost never cries...and he was crying so much. We put him down for a nap and he cried and cried still. I had to tap his chest and hold his hand and rub him...then he finally fell asleep. He slept for quite awhile and woke up in better spirits. But last night he crashed more and more and again and again. Its getting so hard to watch. I hate to see him suffer. He usually grimises when he sees the suction and now he laughs and coos and smiles knowing its going to help him. The cough sessions are getting rougher and rougher... Lots of junk coming out. More and more CPT is needed.

I hate to say this but in all they times Jacob has been sick I have been frightened...but this is not Jacob being sick. This is just Jacob not doing well. I dont know what is wrong..thats one of the hardest things. Something is wrong and I cant fix it...I cant fix SMA either...I cant help my son get better...

I sometimes feel like having a day off. Just 1 day without SMA in it or sadness or pain and having to do everything. Just one day for me... Go for a long drive..be able to pack the kids up and just go here and there. Get out of this friggin apartment. That would be so nice. Now I say this but if I was ever given the chance to go out and do it I wouldnt be able to do it. I wouldnt be able to get away and not go crazy. I feel like Im the only one who can manage Jacob and know what he needs. I feel crazy sometimes too. I feel like what did I do to deserve this? What did Jacob do to deserve this. What did Alyssa do to deserve this? Nothing could have changed any of this.

But then I look at my angel and as soon as he sees me he smiles and coos. I know that I am Jacobs world. He LOVES me so much. And I love him with all my heart. It sucks so bad that Jacob is not going to get better. I pray for a cure every day and every night. Jacob is such a special angel and I want to help him and love him with all my heart. I only wish for a better life for him. Well actually hes got it pretty good. His mom loves him to death and devotes all her time to him and comforts him and cuddles him and loves him and signs to him and plays FOR him and unconditionally will devote her life to him. And for that Im greatful that I get the pleasure of doing. If Jacob were not sick we wouldnt have as great a bond as we do.

I have no idea what all Ive wrote here. Just have a bad few days and worries I guess.
Please know that I love Jacob and will do anything for him and Ill try to get out of this. I only have alot going on and its all getting to me....

Love and prayers

Angela

Sunday, August 15, 2004 3:15 PM

Well Im so sorry it has been sooooo long since my last update. Jacob hasnt been too well at all lately.

Lots of thicker secretions and mucus...choking all the time, fever, fussy, having those vaso-vagal, vasal nerve responses quite often. Im not sure what all has happened this week. Ive been busy planning Jacobs Birthday Party. Its going to be at the Rock Haven. Im hoping that everyone comes. We have invited so many people that have made an impact on Jacobs and my life. Family and friends.

Poor Jacob is needing lots of bi-pap time and more cuddles. He wants his mommie all the time. ITs getting harder and harder to do things again. My nurse was sick for half of this week. Im praying that this week she will be feeling better and able to come back as I have a ton of things that I have to do and get done.

Jacob ended up in the hospital on Friday night. I phoned Tiffany to tell her that Jacobs diareaha was not getting better and only seemed to be worse. Fri afternoon he pooped more than he had ate in the last two days. SO we thought it might be a reaction to the sulfa drugs. SHe said to phone his T.O. sick Kids doc and he thought I should bring him into the peterborough hosp and get blood and xrays done. THen he wanted the results phoned to him and he would decide what to do with him when the results came back. Well the blood looked great and so did the xrays. They just told me they were fine? I never get to see them myself. So I went into the room and looked my self but it was not a great xray and not too clear? But she did say that his heart has shifted a bit. This is to be expected as the muscle in his chest deteriorates the heart usually ends up onto of the left lung. And this is starting to happen

Well I cant do much of an update right now. Alyssa went to the peterborough exhibition with my mom yesterday. I guess she had a blast. She loves to get out and do things. I wish i could do them with her sometimes. ANyway

Bruce and Dale are coming to bring us supper tonight. They had asked us to their house but with Jacob still having a fever and not sure whats up with him I think its better that we wait. So they said great and they would come here!!!

I have to scoop Jacobs poop and bring it to the lab on Monday and also Urine. Maybe he has a bug in his tummy or intestines or UTI or something? Ugh I hate not knowing what is going on with Jacob

The doc did say that this all could just be the deterioration of him...progression of sma...but Id like to not think that way. ITs just a bug of some sort and he will get better and we will find out what is wrong soon enough.

Prayers to all and Ill try to keep updated more often.

Hes gonna be 1 in 5 more days....>!!!!!!

Monday, August 9, 2004 8:10 PM

Well sorry about Jacobs webpage.... Hopefully Ill be able to get his new pics up soon. On the 12th photobucket said that its all reset and can upload more and newer ones.
Keep your fingers crossed cause I have tons and tons of pics to show...yah I know like his page isnt already big enough!!!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Ok do I have a great update for all of you!!!

Jacob woke a few times through the night Saturday night. But he seemed really rough in the morning. Tiff got here about 11 am and was I ever happy to see her. She was so mad at me for not phoning her Saturday and telling her how rough Jacob was. She would have come down to see him and spent the night. Sorry Tiffany next time... Anyway right away she saw how crapy he was. We did nebulizer treatments through his pappy. Gave him more tylonal. She did a MAJOR CPT session (chest physio therapy) with him. I wish I had it in me to 'beat' him like she can. He did cry through it but it got out so so so much stuff from his airways and lungs. I just cant do it that hard. I do it pretty hard but not like she does. I gotta get better and stronger and more like a PT so I can do it like that. It made a world of difference in his lungs and chest. We put him on his side with pillows and its easier to do his back and sides. Its also called posterial drainage. It moves it so you can either suction it out or he swallows it. Man we needed a way bigger cathater and a yanker...(tube) to suck out all the stuff. It was draining still today. We did a great cough session after and man was he upset with us. He did his little wimper of a cry you know when they cant cry anymore. Oh it broke my heart.

But he went to sleep after and I wanted to go down to Sin City to thank them for everything that they are doing for Jacob. Man I couldnt believe the turnout. About 200 people came and listen to all they did. They supplied all the staff and the whole bar. Inside and outside patio. They had live entertainment both inside and on the patio. All food and had a live and silent auction...head shavings Lisa from No Frills Haircutters did the shavings with a friend of hers. I got there and had to do an interview with the Examiner. Then Sin City brought out a birthday cake for Jacob. And we all sang happy birthday to my sweety. No he didnt go. But I bet he heard all the singing. I got to talk with Corrina and her husband Al who owns SIn City. We were hoping to raise about $3000- $4000 for his stroller. Well wait till I tell you the running total!!!!! OMG!

Any way Steve Scott did the mcing for the day and evening. WHat a sweetheart he is. He did a super job and couldnt have had a better guy to do it. Thanks so much Steve. Your a sweetheart. I appreciate all your time and effort you put into all this.

Well they started with the head shavings....ugh where do I begin. A few people shaved their heads but this little boy Cole what a kid. He raised over $400 to shave his head. He came up after and said I hope your little boy gets better. I wanted to cry so bad. I hugged him so much I think he wanted me to get away from him. He was such a cutie. And looks great with a shaved head. My dad....Wayne-papa ...well him and Jacobs dad (Jody) decided to shave their heads. In 1 minute they raised $283 dollars. I think they look great. Jacob loved to touch their hair after. Jody came up later last night to see him and let him touch it. Jacob laughed everytime he let him. Well two women shaved their heads also. Patty -- well she got upto just get a cut...the crowd cooed her on to shave it....$1500 was raised to shave it. I sat with her the whole time. I cant believe a woman would do this for Jacob. I held her hand and she held in her tears. What a sweetheart. She kept her bangs. Her hair was past her shoulders too. She looks BEAUTIFUL now! Patty thank you with all my heart sweety! Love yah. Another woman did it also. I never got to see it. BUt she got about $500 I think. Two brothers there got their heads and gotees off. SOon the pics of it all will be up at Sin City's website

Well in total I think they said more than $4000 was raised in just head shavings! Thank you from the bottom of my heart to all of you who generously shaved your hair. I know it means so much more for women to shave their heads. I couldnt thank all of you enough. THANKS and Jacob sends huge wet slobbery kisses.

I had to leave through the shavings to go home and check on Jacob and get Tiffany something to eat. I wanted to see how he was doing. He was sleeping still of course so she said to go back for a bit. She did some CPT and neb treatments with him. His fever was broke and the pappy was getting tons of stuff out of his lungs still.
I went back for a bit of the auction. Donations were amazing for the auctions. A hot tub was donated and a carousel horse from Sears valued at $500. A TV 27" flatscreen went for $1000. Ron bought alot of stuff. He donated $1000 cash also. He bought more than $5000 worth of stuff and donated for the head shavings. Ron what can I say....THANK YOU!!! Norma got a great bbq...gift certificates were a plenty...oh I dont know there was TONS of donations. Thank you everyone who donated stuff for it. It went so well. Sin City donated part of their drink sales also. Man how generous Corrina and Al are. You are special people to me...I couldnt thank you enough. You hold a special place in my heart. If it were not for you this wouldnt have happened and Jacob wouldnt be able to keep all his machines and equipment upkept and I LOVE YOU ALL so much. Thanks

In total more $13,340 was raised. Way way way more than ever expected. Sin City said that it was their biggest fundraiser that they have ever done. THANKS again from the bottom of my heart. ALl of you.

Jacob had a pretty good night. TIff left soon after I got home and I got to spend some great cuddle time with him. I told him all about the 'party' for him and that so many people love him. His dad came up for a visit later that night.

He woke up pretty happy today. I needed to do some nebs with him and cough him and CPT. He did great. His fever is up again. Chex phoned today and wanted to do an interview. So they came up at 2 pm today. I thought that someone from Sin City should come up today also and say what they did and how much they raised. Steve offered to come up and do the interview with me. He did a great job. It turned out great. I decided to do the interview outside. It was such a nice day and we will be having rain agian for the next few days so we got him outside and his nurse was here. We did it and it was pretty good. We stayed outside most of the afternoon. Jacob loved it outside. Brought him back inside and his fever now is starting to rise again so I gave him some tylonal to try to keep it down. Not sure why it is still up? I hope that he feels better soon. He loved it outside. He was mad that I brought him in... But it did some good to get some fresh air. Hes getting tired so I gotta go put him to bed.

Oh I forgot to mention. Jacob hasnt been able to move his arms at all lately...well months. Jacob has gotten some strength from somewhere... I know where... anyway he can lift his arm up totally in the air and keep it up and move it up and down. I cant believe it...way to go big boy. He will prove to be a miracle baby. I have faith in my heart that Jacob will be cured or a miracle will happen and hes gonna be the biggest miracle Peterborough has ever seen. What an amazing baby.

Mommie loves you so much baby bear. I dont know what I would do if you were not in my life. I love you and will do anything to ensure your happiness. Hgus and kisses to my sweet angel from heaven.

Angela

Sunday August 8 , 1:10 AM

Its 1 am and Jacob is finally sleeping. Poor baby has been so lousy tonight. He has been having those VNR (Vasal Nerve Responses) or (Vaso-Vagal) things like every 1/2 hour or more. He had an ok afternoon but his fever just will not break? Not sure what is exactly wrong with him. Hes actually worse now with the antibiotics. He is having really bad diareha. I started supper about 5 and had to shut if off so many times because Jacobs alarms kept going off and he needed suctioning and CPT and coughing and neb treatments through bi-pap. Poor guy. The VNR things are so weird...if thats what is happening. He will start to wince and then his heart rate just plummets...then bubbles come out of his mouth. His heart starts to rise with suctioning all the goobers out then his 02 plummets? His heart drops to almost nothing then goes crazy high. His 02 goes down so low to like even 20 sometimes. He gets diaphretic (sp?) really bad sweating episodes and is soaked from head to toe. Now his legs and feet are frozen and his temp is still high. I just dont know what to do. All the docs are not in and no oncall pead unless I take him to hospital -- which I just wont do. I try to do all this by myself but sometimes I wonder if he should be in the hospital sometimes to be observed just to see if they could be of help. But what can they do? I have the hospital at home and can do everything here. I am sooooooooooo happy that tomorrow Tiff is coming down. I cant wait to see her. Ill be happy to see what she thinks. She can always tell what is wrong or offer better suggestions.

I highly doubt that Jacob will be able to go to his fundraiser tomorrow at SIn CIty. His very own BD party... If TIff wasnt coming I wouldnt leave him for a second. I will be able to go for a bit with her being here. The Garretts are going to be singing a few songs there tomorrow along with Terry Guiel, Bryan Switzer, Backwoods Boys, Smokehouse, Quicksilver, Blackfly Boogie, Ranger Rick and Gaile, Stu McCue and many more guest appearances!
I cant wait and again thanks so much from the bottom of my heart. Here is the link to Sin City for those that want to check it out. There will prob be picks posted later after its over.
Sin City

Saturday August 7, 2PM

August is SMA Awareness month. August 7th at 8 pm your time zone is the first annual Worldwide Candle Lighting. Please join us is bringing awareness. This will be held every year on the second Saturday in August. People all around the world may light a candle in honor of all children with SMA. As candles burn down in one time zone, they are lit in the next, creating a 24 hour wave of light the encircles the globe. Please help in bringing awareness and take pics to honor those in heaven and those on earth still battleing this disease.
This was from a friend from my support group and thought that the words she wrote were perfect so I just placed them here.

If you could please help in honoring those affected with SMA I ask you to join in on the candlelighting tonight!

Jacob is not much better today. Has really bad diareaha and fever still and just not too great! He just wants lots of cuddle time today. And of course Im giving it to him. Prayers still needed please.

Today on the Trent Radio station 92.7 most of the morning was with Debbie and Jessie. They promoted Jacob and sang and talked about my sweetheart! Thanks to Trent Radio for helping and everything you have done. And sounds like you all are going to be busy the next few weeks. Thanks from the bottom of my heart!

Friday August 6 4 pm

Well here we go..bear with me k. This might be long and all over the place. Way to much info in this little head right now!
Ok Jacob is still not much better. Wed night he slept pretty well. He still has a fever and sounded junky but the neb treatments and coughing is helping. He woke up Thurs morning really really happy!!! Still with a fever and junky but really happy. I did neb treatments and tylonal all day to try to keep him as clear as I can so he could go to the concert. Up until 5 minutes before we left I really was uncertain if I would be taking him. Mom came up earlier so I could have a shower then went home to get ready. Jacob had a good nap so I thought well Ill take him and if he gets too tired or fussy or something Ill take him home. I live on the same block as the church. So we got ready and Uncle Dan (my brother) and his girlfriend Shannon came up to help for a bit. They left earlier cause they were helping at the concert doing the door selling tickets and handing out the door prize tickets. Mom and Dad came up about 5:30 and we got everything packed up and ready to go. My Aunt Sandy (moms sister) came up so that we wouldnt have to take apart the stroller. She put it in the back of her truck to save us some time and lugging and putting it all together. That was awsome and thanks alot Sandy. She also took the girls in her truck cause we had no room. Alyssa took her friend Katherine. They had a blast. Mom and dad and me and Jacob went in moms car. We were in the back like usual with all his machines. Man it takes so long to go anywhere and you have to pack so much. Its not like ok...pack a diaper bag and away we go. I have to bring a hospital with me! And all the medical equipment for 'just in cases' like if one of his feeding tubes were pulled out by mistake I have to have a foley catheter there so I can plug the hole and keep it open...also a syringe with water so I can fill the balloon in the foley. Also you need to have his feeding pump, tape, on never mind that would take all day to write all the things I gotta pack!!!

Anyway we got all ready and loaded up and got to the church. Things looked great and lots of people were there. They all came by to see Jacob. I couldnt help it but if they were going to touch him I would reach out my hand and shake theirs so they couldnt or stood infront or something. LOL I am such a germ freak! I wanted to keep purell right beside his face so they got the pic....NO TOUCHING!!! Oh well. Anyway everyone came to see him and we got into the church and sat down. They came and talked about Jacob and why they were having the concert and all. It was amazing. They are beautiful singers and loving, kind and caring people. I cant thank them enough for all they have done for Jacob. They are amazing and dear dear people. Debbie sang a song jsut to Jacob. Sarah Macglachins (sp?) ANgel song. OH my I lost it I was in tears. They lowered the lights and lit candles and she has this voice that really touches you. Just beautiful. Really really touching. Jessie told us all about him and his life and how he turned his life around. What an amazing couple. Thank you both so much for all you have done. Thanks both of you.
Jacob sang right along with them most of the night. He was taping his little finger. He loves music so much and didnt make a wimper all night. We were there from 6-10 and he did so well. Only needed pappy for a bit at the beginning and enjoyed the entire night. ALyssa had a hard time sitting still she wanted to get up and dance. It was cute. The Garretts also had a video crew there so that they made a DVD of the concert. I cant wait till thats finished. Wow Jacobs concert is going to be on a DVD!!!! Wow again guys thanks both so much!
Most of my family was there...Aunt Sandy, her daughter Trisha, dan, shannon, mom, dad, dads sister my Aunt Lorrie, her daughter Kathy, her daughter Kara, Aunt May and Uncle Dennis, my moms aunts and cousins were there also. My moms mothers sister...Aunt helen. It was really nice to see you. And Jacobs dad went with his sister Shauna, and Jacobs other papa Bruce and Dale went also and they brought a couple with them from Hamilton. Thanks everyone who attended and came. It was a really good time and we all enjoyed it so much. All in all I think about 150 people went. Good turnout! Maybe more...not good on judging amounts yet.
They sang Happy Birthday to Jacob...asked me to say something ....I was really nervous. Peterbouough Teddies dontated a teddy to Jacob for his Birthday. IT was great.
Also Dales work when she went in today I guess her boss at (not sure if I can say who) well he donated $250 to Jacobs account today! Dale tell him a huge thanks from me and Jacob for me k. That was really generous and caring of him. Thanks
IT was a GREAT night thanks everyone!!!
Oh and the door prizes were awsome. Tons of gift certificates were donated for door prizes. Also Jessie managed to get tickets for the Havelock Jamboree. NOt sure who the lady was that won them but they got a weekend pass for 4 I think! Wow what an amazing gift! COngrats and have fun!

Jacob was pooped when we got home. Jacob was talking away and talking away for an hour after. Probably mad that he had to leave! He is saying Papa again. He did all last night and today also. I thought it was just fluke that he was saying it the other week for Papa Bruce but nope last night and today he was saying it over and over. He said it so much he could only manage a Pa last night!!! He has to really concentrate to say things now. He closes his eyes tight and thinks hard and gets those little lips together and goes papa...pa...pa...papa...pa...pa....papa!!!
Good boy Jacob Im so proud of you sweety...my baby bear! Im gonna have to start little bear soon...then big bear!

I got a prescription phoned in from Toronto today for Jaocb. Because his fever is still up and not sure if he has phnemonia or a UTI? Hes been peeing alot so that might be it? Hopefully we can kick it before it gets bad. Ill have to wait to see if he will be ok to go to SIn City on Sunday or not?

Man the donations that are rolling in for that are amazing. The auction is going to be great! I cant wait for that. I hope many of you will be able to go to Sin City on Sunday with us. We are going to try to be there around 2pm. Tiff is coming from Toronto so she can help with Jacob or we can take him for a bit if hes up to it. She is the only one I trust leaving him with for longer than a 1/2 hour to an hour. I know tons of people are shaving their heads for Jacob on Sunday. Maybe even my dad is. And Jody (Jacobs dad) said he might too. I cant wait. Sears Portrait studio donated a real carousal horse. It can hold up to 300 pounds. Kerri and Jennifer have been bugging to get Jacob in for his 1 year old portraits done. I'll be in girls I cant wait. Promise Ill call next week and when Tiff is coming down again Ill be in k!!! Thanks for donating that and they donated a portrait package! You girls rock. Your awsome. They have helped with both fundraisers.
To everyone --- all the staff and Corinna and Steve thanks for all your doing for Jaocbs fundraiser. From the bottom of my heart thanks everyone!

Ok...I have to get back to Jacob now. Hes still sleeping but gonna wake soon so Ill be busy when he wakes. Im still pooped from yesterday and so it Jacob and ALyssa.
I hope he gets better soon.
14 more days and I have a 1 year old!

Wow how time flies!!!

Angela
Update at top of journal!

Wednesday, August 4, 2004 5:30 PM

Prayers are needed please again! And just when I thought that Jacob was starting to get better. He got a rash on his arm a few days ago. On the inside of it? So that part of his arm is always up in the air so its not from sweating? Not sure if its a reaction to something or not? But then yesterday he was a little fussy and didnt sleep long and his chest didnt sound that great again. Funny how one day it can sound great and then the next really crappy. Anyway last night he didnt go to sleep until 2 am and didnt wake up until 11am. When he woke up he just didnt seem too happy. He sounded junky. So when his nurse got here we started everything with him. His temp is up to a fever now, and his left lung has no air entry again, his right is full of junk, his nose is stuffy... So I gave him some neb treatments with ventilin, saline, and salbutamol and pulmicort, started the tylonal for a few days to keep his temp down. Bled the treatments through the pappy, and coughed him this morning..well I guess it was the afternoon. He ended up being really really fussy this afternoon. Not sure what is going on? He hasnt pooped in two days and that always causes a problem so I gave him some Lactulose to hopefully help him go. I just gave him some more tylonal. He ended up sleeping all afternoon which is totally unlike him? Ughhh I hope and pray that nothing too serious is going on. Then we cant go to the concert tomorrow or to the fund raiser at Sin City Sunday.

Ok...to answer some questions from the guestbook?
To 'A friend'...you asked if you could give Jacob a birthday present? Well I have no name for you and no email address? You may email me and tell me some info and I could arrange for someone to pick it up if you would like to give him something. Thanks...
Carol...Jacob loves everything that is small!!! He has lots of little toys. Thats all he can hold. Like little figurines or little cat balls that make noises..the little rubber ones that he can hold. He likes movies and music. His favorite of all time shows is the Wiggles, bo ba, bob the builder and Baby EInstein. Ummmm, things that light up, tigger, pooh, angels, bears, he has tons of bears. I think that about does it!!!
Dawn!!! Marleys? Nope we were getting Alyssas haircut in the shop next door to marleys! Wish I could go out though. You should have said hi! If you would like a pic of Jacob you can stop by and get one! Ill scan one for you. Cant wait to see you at the concert.
Laura and Aaron. I posted to carol what Jacob likes. I hope that that is something that you wanted to know. He also loves to play catch. He has been doing this for the last few weeks. I tell him to open his hand and catch the ball. He holds it open and catches it and then slightly turns his hand so it rolls out. Then he grunts so I have to let him catch it again! He gets mad if I dont give it back to him!!! If he doesnt want to play anymore he just hangs onto it or doesnt open it anymore! He loves to cuddle and snuggle and look in the mirror. Most of all is his tv time. Now he wants to watch it all the time. Hey whatever he wants he gets! Alyssa entertains him all the time. She reads to him and dances for him. Ummm not sure the day just sails by with talking and playing and mostly cuddles.

Please pray for Jacob to get better soon. Im so worried that he has his first second season cold. I hope not and this is going to pass soon. He has been sneezing all the time lately today.

With his first birthday coming up I am getting so excited. This is his second milestone. His first being 7 months old. The average age for sma type 1 babies is 7 months and he sure has surpassed that. Now 1 year is the next milestone. And he IS going to see that!!!

A HUGE THANK YOU GOES OUT TO SIN CITY. I cant thank you all enough... especially Corrina and Steve. They have been wonderful. They held a golf tournament last weekend for Jacob and raised money through that also!!! The fundraiser that they are having on Sunday is starting off to a great success. I dont know too much about it because they are doing it all themselves. They have done advertising and its going to be on tv and the papers and the news. Some of the staff and others are shaving their heads. I guess one staff member has raised over $500 to shave his! They are having a bbq, live entertainment and a live and silent auction. THANK YOU SIN CITY. THIS MEANS MORE TO ME THAN I CAN EXPRESS IN WORDS!

And to Jessie and Debbie Garrett! Thanks so much for all you are doing. All the time and effort you have put into this concert. I cant wait to see it and it is going to be a huge success I hope and pray. You are definately angels brought into Jacobs life for a reason. Thanks and hugs and kisses to you both. Ill see you tomorrow.

Jacob baby. Please get better hun. I hate to see you not feeling well and I want you to get better so fast. Please baby. Hugs and kisses to my almost 1 year old.

Alyssa is doing well. She is excited and cant wait to go to it either.

Thanks everyone!

August is SMA Awareness month. August 7th at 8 pm your time zone is the first annual Worldwide Candle Lighting. Please join us is bringing awareness. This will be held every year on the second Saturday in August. People all around the world may light a candle in honor of all children with SMA. As candles burn down in one time zone, they are lit in the next, creating a 24-hour wave of light the encircles the globe. Please help in bringing awareness and take pics to honor those in heaven and those on earth still battleing this disease.
This was from a friend from my support group and thought that the words she wrote were perfect so I just placed them here.

Tuesday, August 3, 2004 10:40 am

I have to appologize for the look of Jacobs website! I am in the works of getting all my pics and graphics back from photobucket.com. I guess people are taking my graphics and pics of Jacob and not right clicking and saving to their own comp first? So it will be until August 12th that I can upload new images or add any new pics...I am sorry... Anyway....thats another story and gonna be hours to redo everything.

Can you believe Jacob is gonna be '1' in 17 days? The countdown is on!!!! When they diagnosed Jacob I never thought that I would ever get the privaledge or honor to see this day. I am so excited. My baby bear is gonna be 1. Its such a blessing to be able to be his mother. From every look, glance, special kiss he blows me, giggle, laugh, every minute of every hour of every day is a blessing. Jacob has helped me to be a better mother, friend, person, human. He has taught me so much about life in just a year. I may have never been the person I am today if it were not for Jacob. He is more special than I can say.

2 more days until the concert now! The Garretts just called and told me that they are going to be getting tons of door prizes. One is for the Havelock Jamboree. Thats awsome. And they are professionally taping the concert to make a DVD. They are making a nice DVD to sell. WOW. Thanks so much for all you are doing Jessie and Debbie.

Jacob is feeling better. And we were able to get out and about the last few days. Saturday was just a relaxing day. I was able to do a few things around here and just cuddled with Jacob mostly. On Sunday mom came up to get us and we decided to go to the movies. Yup we went to see Garfield. Me, mom, Alyssa and Jacob went to see it. His eyes almost popped out of his head. He must have been thinking wow look at the size of that TV!!!! LOL!!! He stayed awake for about 5 minutes then slept through the whole movie! The excitement must have wore him out! Then we went to moms for a swim and a bbq! Monday Shannon called and we decided to go do a bit of shopping! I havent bought myself an outfit since I had Jacob so I thought I needed a nice one for the concert so we found nice sales and I splurged and boought me something! I am so outdated with clothes! Most are about 10 years old! Then we went back and let the nurse go home and went back to moms for another swim and suntan! I am still too chicken to put Jacob inthe pool. Its still too cold anyway right now. We need a few days with no rain for it to really warm up. Its raining now and thundering right now and I lost power long enough to plug everything into batteries and it turned back on! Thank heavens!

Well I will keep my older journal on the bottom to keep the awareness message up still!
Hope that you all are having a great time and enjoying the summer. I hope to see those of you that can make it to the concert there. Its at Northview Penecostal Church on Fairburn and Towerhill!. Please come if you can. We are going and looking forward to it.

Angela

Friday, July 30, 2004 10:44am

August is SMA Awareness month. August 7th at 8 pm your time zone is the first annual Worldwide Candle Lighting. Please join us is bringing awareness. This will be held every year on the second Saturday in August. People all around the world may light a candle in honor of all children with SMA. As candles burn down in one time zone, they are lit in the next, creating a 24-hour wave of light the encircles the globe. Please help in bringing awareness and take pics to honor those in heaven and those on earth still battleing this disease.
This was from a friend from my support group and thought that the words she wrote were perfect so I just placed them here.

The concert is getting closer and closer! I cant wait I am so excited. The Garretts have been so helpful and have spread the word all over. They even were on a radio show for an hour, had newspapers articles wrote, was on Chex television, and contacted radio stations to do ads.
People are donating things for door prizes and selling tickets! I cant wait, if Jacob is ok I am going to bring him and hopefully he can go!
Thanks Jessie and Debbie! You are truly angels!

Jacob needs a few prayers please. His lungs are both junky and sound horrible. Not sure if he has been aspirating his secretions of if he is refluxing and aspirating? Or if he has phnemonia? I am increasing the coughing I am doing and CPT and doing in line neb treatments. Poor guy. He also has a low grade temp. Thats a sign that something is going on? Or this could all be from teeth? Ughhh I hate not knowing what to do with him and what will help or make things worse?

He slept great last night. My mom and dad came by and Dan and Shannon for a visit. Last weekend Jody (his dad) and Aunt Kara came by also. And Papa Bruce and Dale were here Wed pm? I think it was Wed. He said papa out loud? What a guy wont say mama but said papa? lol

He has had his bath and am just waitiing for his nurse to get here so I can put him to bed and when he is sleeping I have a TON of stuff to run and do today. She is here for 3 hours and it will take me and hour to get him to sleep and then an hour of running and Ill be home before he wakes up hopefully.

I just noticed his eyes are really glossy? Poor guy I know he is not feeling better....hope that this is nothing too serious to worry about. His pead is off until the 3rd and Sick Kids have been great they phone me 2-3 times a week to see how he is doing and they order stuff for me and phone in prescriptions and just call to check on us. I dont know what I would do if I didnt have the support from them or my support group. SMA support is.....no words for them....wondeful...amazing, they have helped Jacob and me so much and if it were not for them Jacob would not be here today.

Anyway gotta run...
Hugs and kisses
Angela

PS I have lost use of ALL my pics...I guess people are taking my graphics and some of Jacobs pictures...If you want to use them or want pics of Jacob just let me know and I will send them to you. They said for the remainder of this month? So I am praying that after this weekend I will get my pics back and be able to use them again? I might have to ask you not to direct link to my pics....STOP. Right click and save to your own computer. If this continues I dont know how I am going to be able to add graphics or pics?
Thanks

Wednesday, July 28, 2004 1:00 PM CDT

Jacob had a great day yesterday. He woke up and played for a bit. My morning routine lately has been to wake up when Jacob wakes. Which has been anywhere from 8-10 am. I then take his pappy off, change his diaper and his g-tube bag drainage. Then do his stretches, I stretch his feet first then knees, and legs, do the running man with his hips so that the rotation keeps his hips from becoming dislocated from being in the frog leg position for so long through the night. Then I carry on to stretch his back. I hold his hips and bum in my hands and lift it off the couch as if he is arching his back. Oh the smiles I get when he does this. It must get stiff for him to always be in the same postions all the time. But he of course never complains unless he just wants turned. Then I do his wrists and make circles with them. Even move his little fingers. Then I do the elbows and have him flex his little muscles for me...well this is what I tell him he is doing! He always laughs. Then the shoulders. I stretch them up and down and then stretch them across his chest bringing his back up with it too. He always goes 'ughhh' like he as if we are stretching also. LOL It is so cute. He totally adores anyone who stretches him. He loves it and so would I. Then I do a bit of cpt to get his fluid in his airways moving. Then I usually do a session with the cough machine. And then suction.
After all this is done I then take his pulse ox off, and undo the little blue tape holding it on his foot, shut his feeding pump off and disconnect it from him. Then I pick him up and he is already saying aba aba aba aba---my taking of this is 'a bath?' 'a bath?' 'a bath?' LOL what a guy he know the only time that his pulse ox is off him he is going for a bath. So I pick him up and then off we head upstairs..all the while he is saying aba aba aba. I do the flying superman thing with him everytime and he laughs right out loud. Man what an angel. We go upstairs and I have his crib in my room instead of his so that when I thought that we would be sleeping up there that he would be in it...oh well someday I will use that bed again and my room and have a sleep on a bed instead of my couch! I take his tshirt off and say hang on buddy just gonna run the tub now, and give him his toy to hang on to until I am back. Get the bath ready and go back to him and take his diaper off. He is really panting now and hyper and waiting, waiting and waiting!!! I lift him out and walk to the tub with him in my arms. We go past the mirror in the bathroom and I hold him up to the mirror religiously everytime so he can see what an angel looks like everyday! He smiles at himself and coos and laughs and I always say where is that beautiful baby boy? There you are! Jacob look how big you are...look at that georgeous baby. Then we carry on to the tub. He knows as soon as he is in the tub I always wash his face first so he lays there with his eyes closed and holding his breath. LOL Really you gotta picture it. He is such an angel and so smart to remember every little detail of our routine. Then I wash him everywhere and soak the little drainage scabs off his belly and they fall off and his two tube holes look perfect again! Then we play in the tub. He likes to bang his little arm off the sides of the tub. I bang then he does...i do and he does...he laughs at the sound he is able to make in the tub. Then I put the washcloth on his head and he shakes his head to try to get it off and laughs. His eyes go cross trying to see the top of his head. I show him his little toes and smell them and say how nice they smell and he again laughs.
He is able to move his legs in the tub a little, out of the water he cant move them at all- never could. And loves the feeling of the water when i swish it around making his legs move. What a feeling that must be for him. A feeling of freedom and independance.

Then we get out I pull the plug and he loves the sound and feeling of the water draining off him and must feel funny so I leave him on his chair right until there is almost no water in and lift that porkchop out and my poor back is feeling the pullling I tell you. I say 'ok ready to run?' And we run back to the crib dripping water all over. I cant wrap him so we run and say 'drip, drip drip' and he thinks it is funny! I dry him and put his diaper on and powder him up and then he knows that his tapes have to come off and we have to clean his tube sites. I think it really hurts him to do this but he only holds his breath and closes his eyes knowing that Ill try hard not to hurt and he never makes a peep. Awww my baby is an angel. I take his tape from the g-tube site off and cleanse the site if leftover smoshy scabs are left and wipe them off and tape the tube back down. Then I take the tape off the gj-tube site and do the same thing. All the while Jacob just has his eyes closed and doesnt peep. I get him dressed and he laughs and coos knowing that that part is all done. I pick him up and superman him back down the stairs. He laughs. I then put him on his egg crate for most of the day and hook the pulse ox back up and the feeding pump. Move all his machines across the living room to him and get them all turned back on and up and running. I lay him on his side now and of course by now he is wanting his wiggles on. He is the biggest fans of the Wiggles. He wont look at anyone when they are on. When visitors come by I have to shut them off so that he will pay attention to them. SOmetimes he gets mad and I have to turn them back on for him, lol!

Then I can go into the kitchen and do the dishes from yesterday and make his amino cocktail. Throw on a load of laundry. By now Alyssa has had breakfast and in nearing lunch time. I get her lunch and she goes outside for most of the day and Jacob gets tired now so I put his pappy back on and suction him from all the moving around. He has a nap for about an hour hopefully two. I go on the comp to either go through all the emails I have or update this page or visit friends and kiddoes online! Then he wakes up and I have to stretch him all over again and cpt. Oh the way he goes to sleep now! Its too funny and really cute! I have to do light CPT on his chest and lay beside him, with my eyes closed and pretend I am sleeping too! What a guy he loves cpt so much he needs it to be done to fall asleep.

Anyway I put a movie on for him or hold him and cuddle him and sing to him and play with him. THen its supper time. I put wiggles or baby einstein on for him and get it ready and he watches it while me and Alyssa eat on the coffee table now so we are with him> I want to include him and not leave him out or hide food from him. He has no idea what it is or tastes like. He is just fascinated with the fact that we put things in our mouth and swallow them and then they are gone! Then I get alyssa to read to him and play with him and do some dishes and then it is her bath time and have a snack and get into bed and she is out for the night and I watch some show on tv and put Jacob back on pappy and turn the lights out. He has to have his rotating fishy light that makes circles onthe ceiling to know it is night time. He will watch the lights onthe ceiling and follow them around and around and around and his eyes get tired and more tired. I am also laying beside him on the couch now. He play and cuddle and I tell him how much I love him and give his hands hundreds of little kisses.

He eventually falls asleep and it is 11 pm and i am tired but I go online and catch up on more emails and journals and things. I usually go to bed anywhere from 12-4am...depending how tired I am. YupI only get anywhere from 3-7 hours of sleep anymore. SOmetimes I dont sleep if Jacob is not well or fusses. He needs turning through the night and I have to fill the humidifier on his pappy and fill his food back up.

If it is nice out we try to get a walk in or if I have a nurse I try to go to the grocery store or bank and get things done. Never more than 5 minutes away from him at any point. I always carry a cell and havent been longer than an hour or so usually just a half hour. I get out of the house about 2 hours a week now! Getting better eh?

Anyway just wanted to write that for some reason? Maybe for me to read down the road or remember the little things I did with him. Ughhhh I hate to think of why I have this journal... But I do and I get to write in it and keep my little updates and always always remember this stuff. I want to print all these out when I get my ink cartridge refilled cause it will most likely take all the ink out of them!!!!

I am adding a little payer that was sent to me from Angels of Destiny. I was sent an email a few weeks ago askingif i wanted an angel to be sent to Jacob. These are special angels. They are prayed over and they anointed it with oil and it very special. I recieved this angel today and it had a poem called The Fathers Love Letter. It was beautiful and really long so I will add it up above this journal entry. Please take the time to read it. Beautiful.

Take the time to sign his guestbook and let us know you were here. I also added a ticker to let us all know when Jacobs 1st birthday arrives! Oh I cant wait for that to come!

Love Angela

Monday, July 26, 2004 9:15 PM

Our prayers have been answered! Jacob shows no sign of brain damage. That itself is a miracle. He proves and beats the odds over and over again!

I cant tell you how scary that was for me and Alyssa but I can tell you that I never ever want that to happen again. It took so much out of him that he slept all day and most of the night after it happened Friday. Then on Saturday he woke up and seems still a bit tired. Through out the day he only had a few episodes where he desated and needed his pappy. He actually seemed happier and more alert.
Saturday night he seemed irratated and needed some tylonal. I think all the pounding on his chest hurt him and that helped him and took just enough of the edge off and he was tired again and went to sleep. Then he woke up and was up till 2 am....ughhh he never is up that late ever. But he settled and went back to bed and Sunday was even better. Mind you when he starts to choke now he gets really scared and doesnt want his pappy off. This is undersstandable because of what happened Id be pretty scared on my own also.

Last night he went to bed at 10 and slept straight through until 10 am this morning. Just like my baby bear again. Back to 12 hour sleeps. Today he has been struggling with his secretions a bit and needed more suctioning than usual but seems ok. I think that he might have new teeth coming in? He only has the bottom 2 and is the right age to be getting all the others. I am happy that he is getting his teeth because some of the sma kids dont get their teeth for some reason.

He is getting ready for bed now and I am getting Alyssa ready for bed too.

Thanks for all the prayers and emails of support. It is so hard to watch your children suffer. They are only children...angels. It is so unfair that they have to suffer.

We lost another angel in our sma community on Thursday the 22nd. Her name is Taleah. She was going to be 4 years old on Saturday. Im sure that the birthday party she recieved in heaven was better than anyone of us could ever have given her. She was sma type 1 like Jacob. It sucks so bad to hear of another innocent child being taken from their parents. I hate this disease so dam much...

Love and hugs and prayers

Angela

Saturday, July 24, 2004 1:45 PM

I almost lost my baby bear yesterday....well actually I did for about 10 minutes....thats right 10 minutes....

On Thursday Jacob was doing really pretty well and we decided to take him out for a walk. I strolled around the parking lot and then walked up to the corner to Tim Hortons for a coffee with Jacob. He was outside for about 3 hours and was doing really really well. Then it was going to start raining so we went into the house. I lugged everything back in... all his machines and stroller up the 15 stairs to my place. It is not easy going anywhere or doing anything.

He had a great night and slept great...no signs of anything.

Then on Friday he woke up really happy and I had our favorite nurse here and we were planning a great day outside for him. It was just right not too warm or humid, I was gonna take him to my parents house and maybe even get him into the pool.

Well When she got here we thought that we could get him on his belly for a bit and see how he did cause he hadnt since the last time she was here. He was really fussy on it and didnt like it like he did last time. But we did some great CPT on him and got things moving around a bit. His nose had a few bubbles coming out of it and we thought that that was from being face down and all the cpt. He was getting really fussy so we thought we would turn him back over and put him back on his pappy.....

He started to crash...I thought ok this is nothing it happens all the time no panic nothing to worry about. I put on his pappy to get 02 into him quick...nothing he was turning blue.... I started to get really really scared cause his pappy ALWAYS helps him and he gets better on it. This was different. I thought I had seen him blue before...NO WAY....NOTHING LIKE THIS..... his lips have been blue and his skin a pale white that I called blue. He was as grey blue as tht sky....from head to toe... His arms, head, chest, legs, toes every inch of him was blue....I panicked....I really panicked this time...I couldnt think I couldnt move I couldnt do anything.... Thank god she was here cause she deals with crashes and sma babies and cf patients all the time and doesnt panick or freak out just gets to work..... I hate myself for freaking and not being able to do anything.... She had his head raised and was pounding on his chest so hard to get his heart pumping and air into his lungs.... I was saying STOP your gonna break his ribs... I freaked out. After about 5 minutes of no air into him and no sign of life she said get the 02. I ran got it and it didnt work... OMG Im freaking out...I got the cylinder instead and she tried to get it going and it just wouldnt work. Call 911 she said.. I was crying and saying "not now Jacob, Im not ready..."I tried to talk to the lady onthe phone I could only say bring 02 to my house now asap...hurry my baby is not breathing..I couldnt get into details with them.... We tried everything to get jacob back. Nothing was working...I thought this was it.. I thought Jacob was dead. 3 ambulances came and 6 paramedics and even they looked scared when they got here. One asked 'How long has he been gone for....how long has he been this color....what does he have...."questions questions questions... I couldnt do anything or answer I thought I lost my baby. They worked so hard and had 02 bleeding into his pappy and a mask over his face he was getting like 15 liters and managed to get 02 back to the 20s. But this is after about a good 12 minutes.... We took pappy off again to suction and she went through his nose this time... Blood is all through it? She got a huge plug out finally and his color started to rise slowly...still no sign of life from him though. They wanted to bring him in and I said wait a bit and see how he does. He came too after about 10-15 more minutes and then had pinky color again and looked better.

They took info and left after I said I wanted to keep him home. I was and still am in complete shock of what happened. I dont believe how close we came. I am and they are a little worried about brain damage because of being gone for thatlong and being without 02 for so long. He was so wiped after that that he just went to bed and stayed asleep most of the afternoon and night. It took till later about 5 for him to start playing again and smiling. Then today he was laughing and smiling and having a great day.

I hope all that is easy enough to read and understand. I am inshock and upset and in disbelief. I know that he wont die of sma it will be something like that plug that will take his life. But how hard is that going ot be to live with knowing that I couldnt get it out or panicked and freaked and couldnt help him or think clearly?

She thinks if I was alone I would have done it like I always do but because she was here and I trusted her (like I do with his life...she is one of the only other people that doesnt have a member affected with sma in her family and I trust her with Jacobs life. She is an angel sent from heaven and saved my babies life). She said that because she was here and I froze and let her work and do what she had to do.

I hope that for his next plug I can do what I have to do and dont panic....It was so close yesterday....I did lose him. For a few minutes I was looking at my life without him...I cant do it...I cant do this without him.
OMG I dont want to lose him

Poor Alyssa was here when that happened and seen most then went outside...after the paramedics left I had to go out and get her and talk to her. She was soooooo upset. Me to we held each other and had a really good cry. I told her that we are trying to save him. I didnt want to tell her that he wont die and give her false hope but I also dont want to lie to her either. So I told her we dont want to lost him either and he was choking andwe couldnt get it so we called 911. I said he was better now but really really tired.

My baby. No one can ever be ready for this. It is not fair and it sucks and I hate this...I hope and pray that I can handle his next one if I am alone. Which I am most of the time.
I dont want t lose him..not now not ever....

Angela

Wednesday, July 21, 2004 11:41 AM CDT

~~HAPPY BIRTHDAY MY DARLING ANGEL~~

Wow my baby bear is 11 months old now. Yesterday he turned 11 months and in one more month he is going to be 1 year old. I never in a million years thought Jacob would be here today and doing well and coming up to his first birthday!
When he was given the diagnosis of SMA those three letters have haunted me everyday. I try to look at Jacob like any other baby. But when you see other babies it really sinks in that he is just not like any other baby. I have so many thoughts and feelings lately. Mostly because he has been struggling with something lately. As he gets older and he approaches that 2nd birthday it is only going to get harder. I try to look forward to each day but as each day passes we are getting closer and closer to winter. I am so frightened of what is going to happen this winter. I really am. Poor Jacob honestly just made it through the last winter and he was so much stronger then. Now he is so weak I honestly dont know what to do or how to prepare or how to stay positive with winter coming.

Sunday we went to the Garrets, Jessie and Debbies house out in Cavan. It was a great time. Jessie was having a birthday party for him and his son, and theyinvited us out for the day and supper. We had a great time and got to spend some time talking about what they have accomplished so far in their carreer. Lets say multitalented people! It was so much fun and a pleasure to meet you. I cant thank you enough for putting together this concert for Jacob. It is on the 5th of August at Northview Penecostal Church on Towerhill and Fairburn. Tickets are at the door for 10 dollars. Or if you would like tickets because you cant attend let me know and Ill send you the info how you can support even though you cant go. Our goal is to raise enough to pay for his wheelchair stroller. I hope we can do that and we wont have to worry about that anymore.

This week has been really trying. I have been a little depressed lately? Not really sure why? Probably because of Jacobs newest goings on. He has been having troubles with his heart? I think? See when he is just choking on his saliva or has a mucus plug he desats (oxygen drops) and then his heart rate rises...CPT and suctioning or coughing and then pappy has always helped. And this happens so often throughout the days that it doesnt even really bother me anymore. I feel confident that I can help him with anything now. But Since Sunday he has something else going on? He will look distressed and worried and then panick and cry and wince in pain. His heart rate plummits and drops to almost nothing and then his 02 starts to drop. I do CPT and pinch him to get him excited and then put pappy on him. But nothing comes out. He isnt choking or have a plug or anything like that. It is like he is having mini heart attacks? I have everything here under the sun for him with breathing difficulties, or choking and what have you, but nothing for his heart? This has happened many many times now. About 3 times a day? Too often if you ask me. I am not often frightened of anything I have to do with Jacob or for Jacob but this is really scaring me?

I called his pead today to see what he thought and he is enjoying his holidays, and I called Toronto Sick Kids to talk to some of the RTs and Docs there that I keep in contact with and left a message. I called Tiff and left a message?
Sick Kids called back and thought that he might be in pain because of something going on and this is his bodies way of telling me that he is hurting or distressed? I hate to think that he is in pain? But he seems so happy all the time? Ugh I have no idea what is going on. All I know is that I dont ever want Jacob to suffer for a day.
I want each and everyday of his life to be happy and fun.

Kristi thanks so much for the packages I got today in the mail. I love that book and think it will do wonders to read such happy and warming and uplifting stories. Its called 'A Cup of COmfort' I cant wait to read it. And Alyssa loves her barbie, and Jacobs musical blankie and teddy. I will take many pics with that black and white camera and send lots of photos to you hun thanks.
Your a great new found friend!!!

Well I cant think of anything else at this moment I am trying so hard to keep a journal everyday but this is so hard to do. I will try harder. I would like to keep track of everything in a day on here and want to start that soon.
Especially with winter coming.....

Thanks for visiting and please take 1 minute and sign his guestbook for him.

Angela

Saturday, July 17, 2004 12:42 AM CDT

Sorry for not updating. We have been busy!
Everyone is emailing us about the state of emergency that we were in. Well we were fine but so many others have had roads washed away and lost their yards and basements were flooded. Mom had her basement flooded but it is ok now. I am up in a 2nd and 3rd floor apt so it didnt affect us at all except it was hard to sleep with all the rain. It sounded like a hurricane was ripping through the area it was sooo loud. Alyssa woke up and needed to sleep with me and Jacob down here in the livingroom.

Jacob has been doing ok. He has needed most everyday on his pappy and I upped the pressures again trying to help him breathe better. With this heat he just cant breathe out in it anymore, even with the air conditioning on. Poor guy I hate to see him struggle to breathe also.

He has lost most of his smile now. He manages to smirk a little and then sticks his tounge out. I hate this so much. I want to see him run and play and some day soon I know Jacob will either be cured or a miracle will happen and Ill get to see Jacob kick his legs. Or he may pass and I will know that up in heaven he will be able to play with all the other angels and do whatever he wants to do. He'll play ball and swim, and hockey and eat! Man I bet he would be a big eater eh!!!

Any way more so than not Jacob has been doing well. He smiles at me with his eyes.

I am trying to contact many doctors and other moms to try to get started on preventative measures for the winter. Jacob JUST made it though last winter and he was so much stronger then. I just really dont know what to expect this winter. I hope that he will be fine and well get through it with flying colors but really who knows. I just want to do everything I can medicine wise to give him the best chance. So far i think Im getting him a few vaccines and needles and maybe start the pulmicort and salbutamol neb treatments through bi-pap to try to get those lungs ready for september when Alyssa will be bringing germs home from school. I hope that he doesnt get even one cold but realistically I think we all know that next winter will either make or break me and Jacob. IT is going to be another test of faith and heart and strength. I pray that Ill have enough strength to get through it.
But enough about all that.

I have some reat news The Garretts are so pumped about this concert!!! I am too! Laser Grahics printed out sooo many beautiful posters and tickets for it. I hope it is a great success and this stroller is going to be paid for and we wont have to worry about it anymore. I cant thank Jessie and Debbie for all they are doing for me and Jacob. God Bless you both. Thanks so very much from the bottom of my heart!

I gotta get going so Ill talk soon and update when I can!

I hope everyone is ok and safe and happy, and well. I havent had much time to check in on our friends with summer here and ALyssa home all day now and the heat and housework!!! Well you allknow the drill!
Anyway until later
And please sign Jacobs guestbook!
Angela

Wednesday, July 14, 2004 4:32 PM CDT

Warning not a happy entry!!!

Well I almost lost my baby bear yesterday. And it was my fault. How the he** do you forgive yourself for such a
stupid mistake. The day just sucked from the minute I woke up till I went to bed.

It started that I slept in...Tiffany from Sick Kids was coming down yesterday and I was all excited and we had such a great day planned. It was sopossed to be sunny and warm and we were gonna do some errands and shopping and then
swimming and a bbq at my moms then come home and she was gonna leave at 8. Well I slept in and set us off to a late start. Got the kids bathed and fed and ready to go.
Called the pead to see if the blood work from weeks ago was finally in and he said that it only said all the aminos were fine? No numbers?
So we must have done the wrong blood cause I wanted to know what the glutamine and aminos were. SO if you know what the blood work is sopossed to be called and show let me know k. Also he said that it was sopossed to be humid and wouldnt go out today with Jacob? Well I thought it wasnt that bad with a nice wind and thought otherwise. Didnt realize that it was the 13th. See I was sopossed to have Jacob on August 13th, moved to #13, was in a bad accident when I was younger on the 13th, and now yesterday. The 13th should just be deleted from the months. I hate it and will NEVER go outside or in a car on the 13th again. And cant wait to move!

Anyway got everyone ready when Tiff got here and packed the car.

Well we go down to moms cause the stroller was in her trunk and drop alyssa off so she could swim while we did running around with Jacob and he could go downtown for the first time. Well we parked the car and I left it running with the air on for Tiff and Jacob. Got the stroller out of the trunk and put it together and then packed it full of his stuff.
Well I can take my keys out of the ignition with it running cause it is broke well I set them in the trunk getting all the stuff out. Then shut the trunk. OMG I just stood there. Tiff says what...well I went into the car and pushed the trunk button. Nothing. It is broke? So im starting to freak.. Keys in the trunk and car running. Tiff says no worries call CAA and they will unlock it. So we go into the store right there and use the phone. I dont have my CAA card with me but said that they would come anyway. SO we wait and wait and wait. They took about an
hour and a half. We went to the bank and did some shopping and stuff. Thank goodness Tiff was there or I would have lost it totally. She has some strange ability to see the light in everything and keep me calm in the midst of everything. She is deffinately heaven sent!!!
Well I put my house key that was in my pocket into the ignition to shut it off! Thank god I was able to do that or we would have been out of gas too. Tiff is just laughing and thinks Im hilarious? Im freaking out.
Well they guy finally showed up. Jacob is on pappy by now and doing fine. He was so happy to be out and about I love to see him so happy and talking away. He loves the outings so much. SO anyways the dumbest lock smith in Peterborough
comes. Tries everything under the sun to open it and cant do anything. So now it is 545 and I had locked them in at 3. Im pissed and just want to go home. This guy is an idiot. He even said to me well have you used this lock today? It doesnt open? Well let me think about that....I jsut locked them in it right....ughhh idiot.
Anyway we got the car started somehow and he made us go 2 blocks up to his shop. Tiff had to walk with Jacob. Well we get there and he tries everything and finally got a screwdriver and hammer and knocked the crap out of it. And says well now any key will open it? You have got to be kidding me? He killed my lock. Anyway whatever then he
says that I have to pay him? Right I laughed right out loud and so did Tiff. Pay you for what? Im calling CAA back tomorrow to complain about you and get my lock fixed.

But we went on with our day and stopped at Sin City and said hi to the woman that is putting Jacobs findraiser together. She is so nice and caring. She was so happy that we stopped by and she got to meet Jacob. They have alot planned and Ill keep you updated with what they are doing.

So we packed everything up and went to my moms. Supper was late cause of us and we ended up having it and it was great and we relaxed for a bit. Jacobs one battery ran out and we hooked him up with extension cords. Well then we had to get going. ALyssa wouldnt get out of the pool Im grumpy and tired and stressed and Jacob wanted to go to bed. He was getting tired too. SO I pack everything all up get it into the car and try to open the trunk! NO!!! It wouldnt open. SO I went and got a screwdriver and killed it again and opened it and put the stroller in and tied it shut and got into the car and said well lets get home. Jacob started to crash on the way home. So I wanted to pull over and hook him up in a coffee shop or something and Tiff said no just get home...hurry and she kept making him mad to breath and I was really losing it.
UUUGGGGGHHHHHHHHHHHHH.... She siad no just get home. Jacob stopped breathing many many times. I was so freaked out she was gonna do CPR but managed to pinch him and bug him enough he was wimpering a little. I was really losing it by now. SHe said at the last stop light if this one is red you gotta stop.... OMG I was so scared..If she is scared then I was really scared. I drove so fast home got everything in and hooked up and he is sleeping now on pappy but man it was close. I am still shaking. He stopped breathing more times than I know. He was white. His 02 is only 92 now on pappy at full pressures. Im scared upset frightened shaken and just plan old upset.
How could I almost lose him cause of my error???? I hate myself so much. I NEVER want to leave the house again. Man I am a horrible mother....
That was my shitty shitty day
Bad mom award here

Well today Jacob is not much better he is fussy and grumpy and needing lots of pappy time. Not much is going into that lung. Even to turn his pappy off to fill the humidifier he gets so mad. I think yesterday really really scared him and he is worried that he wont breathe without it.

Ughhh I hate sma and this disease.

I wonder if 'normal' families that have 'normal' babies and all they need to do is pack a diaper bag know how lucky they really are. I am also lucky cause I get to care for an angel but sometimes you wonder if others take what they have for granted and dont appreciate how lucky they really are.

Anyway thanks for listening.
Angela

Monday, July 12, 2004 7:12 PM CDT

We had a great weekend! I hope you all did too!!!

Saturday was a perfect day. I am still so excited over how great it was to meet and see so many other sma families. I felt right at home. It was great to see other kids with Jacobs condition flying around in their power wheel chairs. They were all so happy and looked great! There was only 1 other child that was a type 1 there that I saw, Hayden. He is a type 1 and 4 years old. Mind you he is obviously alot stronger than Jacob as he is still eating and can tolorate time off his bi-pap and can sit up with supports. I hope Jacob gains some strength back and can eventually drive around in a powerwheel chair some day!
The rest that I saw were type 2s. They were all chasing eachother in their chairs and playing. It was great. They managed to raise over $250,000!!! I am so happy it was such a successful event. I got to meet many of the parents I talk to and had some great discussions. I also had the pleasure of meeting a few families that have lost their loved ones. It was an emotional day to say the least. I am so greatful for the weather and the stroller to enable us to get there and be able to attend! Fun Fun Fun!!!

Then we came home and were pooped! Jacob did great at the run and had a nice nap! We got to meet Marcia, Erin and their gang of five kids! I am happy that we got to finally meet. Ill put up pics of the event when they are developed!

Sunday we got up and ready to go again. It was Jacobs prayer day. Our church is so loving and it was nice to get a chance to get out and about. Beautiful service! Chex news (lol) even showed up to take a clip of Jacob at church and his prayer day and his stroller. A little intrusive I think but hey he is the community baby now right! Oh well it is onthe news tonight.

After we went out to Normas house to have a relaxing day and lunch. They kids all got to go out on their boat and Norma took alyssa on the paddle boat too! She lives in an immaculate home onthe water and are blessed very much with a beautiful home and georgeous view. They put together a great lunch with tons of food! Her sister (Carol) and husband and kids were there too! Mom and dad went and the Pastor from church and some of their friends. OVer all a GREAT day! It was nice and relaxing. I didnt want to leave!!!

Well on the 5th of August is going to be a concert for Jacob. The country gospel group The Garrets Visit their site are putting together a concert on Jacobs behalf at Northview Penecostal Church on Towerhill and Fairburn St in Peterborough. They want to help Jacob and help pay for his stroller. I cant wait for it!!

Also on the 8th Sin City a local bar in Peterborough asked if they could do a fundraiser for Jacob. They are going to be having an auction and helping also!! I cant thank everyone enough! Things are all coming together.

Also if you could help us with one thing that would be great! August is SMA awareness month. And I would like everyone to try to raise awareness. If you could please help with this new awareness lightening we are trying to do that would be great. Please copy and paste this next part of my journal and send to everyone on your contact in email or through snail mail or phone about it! I want this to be as big as we can get it. Then if you want to take pictures and send them to me sma support would like pics to post so I will forward them on with your permission! If you could help raise awareness and help fight this devastating disease all the more people to help get info out about it the better! Thanks I know many of you will join in the candle lighting!

Please join SMA families in honoring SMA children with an annual candle-lighting event in August, during SMA Awareness month.
This event was designed by an SMA parent, Karen Slavik, and
is modeled after the world-wide candle-lighting through Compassionate Friends.

This year the first event will be held on Saturday, August 7th, 2004 at 8 p.m. (in your own time zone). At 8 p.m. you can light a candle or candles in a prominent location ( a front window, on your doorstep, at the edge of a driveway). If you want to share your experience, invite friends, family and neighbors to participate as well. You can even alert the media to this SMA Awareness event.

This is not a single organization's efforts, it is for every family to participate in if they so choose.

Families of Spinal Muscular Atrophy
www.fsma.org

Thanks so very much....have a great week! I know we will

Angela

Friday, July 9, 2004 1:35 PM CDT

I have sooo much to update and not really any time to do it. So this is going to be short and I will update more Sunday night.

First thanks for all the wishes and emails of hope and prayer I have gotten. I cant thank all of you enough for always being here for me and my family.

My Aunt Sandy came by Wed night for a visit and brought Jacob an awsome little teddy that sings a prayer. It is cute and cuddly. I love him and so does Jacob. Thanks aunt sandy. She brought it all the way from Florida!
Also my Aunt Barb and Uncle Bob my dads sister came for a visit to see Jacob! We havent seen them in awhile so that was a really nice visit!
Jacobs dad came to see him Last night and spent time with him. Jacob always has so many kisses for him? It makes me jealous!!! LOL NO really he does everytime he sees Jody he blows 100s of kisses for him. I think he associates Jody with kisses or something cause he always does it. I am glad cause that is great exercise for Jacob!

Ok GUESS WHAT!!!! THE STROLLER IS IN MY LIVINGROOM AT THIS VERY MOMENT!!!! I am doing the biggest and happiest happy dance ever! Let me tell you that it is way more than I expected. It rocks! We are going to be able to do sooo much with it now! I am so happy. Now allwe have to do it pay for it! UGhhh but believe me it is worth every penny! I cant wait to show pics of Jacob in it. SOon really soon I promise.

Jacob has been doing 'ok' for the last few days. Hasnt been off his pappy much at all because of his lung. I really dont think that it is ever going to pop open or stay open. I pray that tomorrow it will be ok and he wont have too much trouble out in the heat with Jacob and his lung. I am so excited to be able to go out and meet other families that are dealing with sma or have lost their angels. Pray for great weekend!!!

Please remember to pray for Jacob this Sunday the 11th. It is a nationwide prayer day for Jacob and SMA. There is so much response that we recieved from it I cant be express how grateful I am to know so many people will be praying for us. It is awsome!!!

Tomorrow we go to Newmarket for the Rebecca Run. If you wnat to read about it the link is on my last journal entry. Click read older journals and it will take you to it. I cant wait to try out the stroller. I am making sure all the machines will go on it first and I tested the batteries yesterday and know it will work and everything. So wish us luck on our first outting!!!

I have been asked how people can help with Jacobs wheelchair stroller many times now so I will put this up. If you would like to help or dontate to help pay for Jacobs wheelchair stroller an account was set up from Norma an accountant of ours and she started the fundraising and you can donate to any TD canada trust bank under baby Jacob or angela trick. Or you can call Norma Gould, Gould Accounting (705) 745-8390, or email at njgould@bellnet.ca

Again thanks for all your help and wishes and prayers. I cant thank everyone enough.

I hope and pray all our friends are doing well and have a great weekend!
Enjoy your weekend!!!
Angela

Tuesday, July 6, 2004 9:30 AM CDT

Good morning...

Well I have to appoligize again for not being able to update his page as often as I can. I just am not on this computer that much anymore. Just spending time with the kids, and finally I think my depresion is getting on the brink of being over! I have actually been able to clean the house more and more. Im sure the visitors and kids appreicate it more than I do. ITs not spic and span but it is getting better!!! And I even did my hair and makeup on Saturday and listen to this...Alyssa says to me "Mom where are you going"? "Nowhere" "Well you look so pretty! Why do you look pretty"? LOL So what does that mean from a 7 year old! MOM you look awful and never do your hair and makeup anymore! So I am trying to look more like a mom again and do teh mom things I am sopossed to be doing. I dont think Jacob is liking sharing his mom again with the house and Alyssa but Alyssa sure appreciates it! Isnt it funny how you can just wake up one day and say MAN have I ever been in a slump! I have been getting up doing everything all day long with Jacob, laundry only when we run out of stuff to were, whipping up stuff to eat or just getting take out if someone comes over or ordering it in, never doing anything with myself. Then you just wake up and say ok ok ok I cant change anything and this isnt helping anyone...so get my A** in gear and start doing things again! Well I am going to try to live again and get out of this slump I have been in. I cant wait to get that stroller and be able to go for walks and stuff...take alyssa to the zoo and stuff. Yeah! Moms out of it now!!!

We didnt do much of anything last week. Mom came up almost everyday like usual and helped with stuff. She is amazing and so strong. I love her and have no idea what I would have done all these months without her. Mom I love you and appreciate all that you do for me and my family. YOUR THE BEST!!! She really is...I cant even remember the last argument that we have had. Like ever!!! We are so close I tell her EVERYTHING!!! Im sure she wishes I didnt tell her some things but I do I tell her everything.

The weekend was busy! Well Sat turned out to be a slow day and just enjoyed laying around and got alot of cleaning done and Jacob was such a good baby letting me leave the room longer and longer so I could even scrub the kitchen and bathroom floors! Mind you I came down every few minutes to jump like an idiot and play peek a boo so he thought I was hiding then come back again! Or he just thought I was a really really silly mom!!!

Sun was packed full of visitors. See there was a good reason Jacob let me clean! First Jacobs dad, aunt Kara, papa Bruce, and Dale came over and spent most of the afternoon here. Then Mom and Alyssa came back...oh yeah Alyssa spent the night with my brother and Shannon Sat night. Shannon took Alyssa to the movies to see Shrek 2!!! She said is was an awsome movie! Thanks Shannon! So mom brought Alyssa back for her and she missed me and told me all about the movie... MOM left then later My Uncle Dennis and aunt May came over with my cousin Lisa and her husband Matt. Lisa moved to the States years ago now to go to school and ended up snagging a hottie!!! He is great they went to the same bible college together and now he is in the Army! She looks great and soooo beautiful! I miss her so much. So we did a nice prayer for Jacob and she is gone again for a few more months. It had been 2 years since I saw her last. Alyssa was the flower girl in their wedding! So the day was busy and Jacob missed his nap and that threw him off for the whole day. I paid for it that night he didnt want to sleep at all because his nap was so late. But I know better next time if he is tired Ill just say ok Jacobs going to bed so either sit and be quiet or leave and come back!!! Or watch him tonight while he doesnt sleep!! No he ended up going to bed at like 1-2 so it wasnt that bad I made him get up earlier on Mon and he had a great nap. So it is fine!!!

Poor Jacob. His darn lung just wont stay open? It is the lower lobe that just cant hear anything in at all even on bi-pap. But off bi-pap hardly any air is getting into the upper lobe. I really dont think that lower lobe is going to pop open again and stay open. He really struggles off bi-pap and cant keep his 02 above 95 ever. I hate to see him struggle to breathe and I hate to see him on his pappy all the time. But really he is sooo much more happier on his pappy that if he wants it he gets it. He is still on it for about 18-20 hours a day. I still hate sma as much as ever. I just think we are coping with it better now thats all. We have a routine now and I am soooo used to anything that can happen to Jacob. Nothing really gets me scared that much anymore. I know if he is desating and blue and not breathing and heart is dropping and alarms are going off...well I just turn the alarm off and get to work. After it is over and Jacob is better the shakes come then!! Thankfully not during. I would hate to be suctioning him out and then shaking like a leaf!!! I think this is just all normal now and even reading my last journals I dont get freaked out that much anymore and sort of know Ill be able to handle it. Or have the faith that whatever happens was meant to happen and I did all I could do. I thank the Lord to whoever envented the bi-pap. I wouldnt have my baby bear at all right now if it werent for that bi-pap. I would have lost him back in Feb and every day since!

Yesterday I had my nurse and needed to go out and get a few things so when Jacob had his afternoon nap on his pappy I could leave cause he has never ever so far (knocking on wood) had a real bad time on his pappy? So I feel more comfrotable getting things once a week when he is sleeping on his pappy. I had to go to like 5 Health stores to get the supplements that Jacob needs for his diet. But I got them at the 6th and finally rushed home. I told her to call me when he woke up and she did just in time and we went home!!! What a good boy!

I am getting so excited to be able to go on the 10th to the Rebecca Run we wanted to be involved in so we can meet other sma families and meet other children. Here is the link if you want to read up about it! Rebecca Run
Now that we will be getting the stroller we will definataly be able to go I am soooooo happy!!!! I just hope the stoller gets here it is now Tuesday and if it doesnt get here soon I cant take Jacob? Well see please pray that it gets here and we can go! I just hope we get enough money to pay for it! Ughhh oh well they are not getting it back lol~~~ Well get it somewhere.

And on the 11th is a prayer day for Jacob. Norma has contacted many many hundreds of churches through email and phoning and from one side of canada to the other churchs are participating in Jacobs prayer day. There are so many people praying and participating in Jacobs prayer day!
I cant wait till Sunday miracles are going to happen!

I got a huge package in the mail from Kristi! Oh my she sent us way to much stuff!!! Jacob got two outfits, a big stuffed bug, and a magnetic tigger! One that can go around his wrist! And she sent Alyssa a barbie and two polly pockets with crafts, and some bath stuff!!! Kristi thatnks so much! SHe is having her surgery Thursday cause one of the masses looked suspecious. Please pray that she has a quick recovery and is able to go to her exams next week! Kristi I am praying and when you are able to let me know how you are ill be thinking of you all day and everyday till I hear from you. Prayers going out to you big time girl!

Here is the pics from the last journal entry Ill put them back up till I figure out what ones I want on his site now it is of Jacob outside in the Village Community Wagon...he is way to big for it thats why Norma bought the other one! Anyway I had to share this with you
And this is one of us last week

And this one is Jacob sitting up on his pappy and in his bouncy seat and his tummy time!!!

Talk soon
Angela

Thursday, July 1, 2004 9:52 AM CDT

Good afternoon everyone!

Well I again have tons to update! First look at this pic...it is of Jacob outside in the Village Community Wagon...he is way to big for it thats why Norma bought the other one! Anyway I had to share this with you
And this is one of us last week

And this one is Jacob sitting up on his pappy and in his bouncy seat and his tummy time!!!

Ok On Sunday Jacobs dad and Kara came to visit with Jodys dad (papa Bruce) and Dale! Thanks for the visit guys!

Ann Elis mom sent Jacob a beautiful bear that has a blankie with it. If you squeeze the head of it it plays the most beautiful prayer in a cute little voice! And some books!!! Jacob loves books Ann....thanks soooooo much!

Carol Burgess sent me some prayer cards. I loved them Carol. They mean alot to me and Ill keep them forever! Thanks so much I love them and now I have your number!

We got some more happy mail from The Bears Who Care and Erin a special Bear called me and she is going through for her nursing also. I hope you get there Erin you are a womderful girl and have so much to offer people. Thanks for the call and I hope to see you on the 10th!!!

Ok Jacob needs prayers. His left lung has collasped again. It just doesnt have the musles around the lung to support it anymore. THey have wasted away so much that without his pappys pressures it cant stay open by itself... Poor Jaocb I hate to see him go through crashs and with he would just keep his pappy on 24/7 but he wants little breaks here and there and also I get to see his beautiful face!

I looked back and the last time Jacob was sick was the beginning of May. So Jacob has done really really well for the last 2 months. Except for his bowel issues and this lung that collasped he has been really really healthy. I can only thank the Lord for that.

Well the interview with the Tv went really really well. I think it turned out great. Man I have to go on a diet though I am gaining all the weight back!!! ANyway it came out great. And yesterday went well with the paper interview. That was Jacobs 10th? time on tv i think and his 13th time in the paper? I think? Anyway I was going to try to figure out how to scan some of them and show them to you so you can see them too!

I have great news!!! The wheelchair stroller that we have been wanting to raise money to get! Well it is made by Exomotion and I have been on the phone and emailing the woman that works there and shipps them and custom makes them for our kids well she sent it out to us by UPS on the 29th!!!! Can you believe that!~!!!!!!! We can make payments as they come in from the money we raise!!! I cant thank you all at Exomotion enough! You are truly amazing! Thanks soooo much. I cant wait to be able to have the freedom to take Jacob out and about and with all his machines and have the security that if I need anything than I have it right there with me! THanks soooo much!

And the 10th is the Rebecca Run we wanted to be involved in so we can meet other sma families and meet other children. Here is the link if you want to read up about it! Rebecca Run
Now that we will be getting the stroller we will definataly be able to go I am soooooo happy!!!!

And on the 11th is a prayer day for Jacob. Norma has contacted many many hundreds of churches through email and phoning and from one side of canada to the other churchs are participating in Jacobs prayer day. There are so many people praying and participating in Jacobs prayer day!

I am soooo happy that everything is turning out great! We have been having tons and lots of cuddles and play time. He is now growling like a dinasaur. He copies almost any noise i make if he can and loves to try to communicate! We have our own special language!

Oh dear this is really really long!
SOrry Ill get going now and tell more of the 10th and 11th in the next entry
Talk soon and Ill be buy soon everyone!
Angela

Tuesday, June 29, 2004 12:13 AM CDT

If any of you watch Chex TV via cable or satelite we are going to be on another broadcasting tonight on the 6 pm and 11 pm Chex news!!!
I hate being interviewed but it is well worth it in the end! I am sooo nervous!
Later!!!
Ange

Saturday, June 26, 2004 5:40 PM

Well I have good news and bad news and happy news and thank yous.... So please bear with me this is gonna be long!

Jacobs dad came by for a bit on Wed evening to see him!

Thursday I got the pleasure of having our favorite nurse Tiffany come by again all the way from T.O.!!! I am sooooo happy to see her when she comes. Jacob had the biggest smile on his face every time he sees her. Also every time she is here Jacob gets to do some things that he never gets to do. First we got to sit him up in a bouncy seat with his pappy on! He got to see the world in a whole new way! Upright!!! Well after about 40 minutes he got upset and wanted to lay back down and man did he ever have the biggest pout on his face. That bottom lip couldnt have stuck out anymore than it was!!! Then we got really brave and decided to take him outside for a bit. We lathered him up in sunscreen and he looked like a slick whale!!! We got a wagon and put some pillows in it and brought out his machines and then Carol our Super saw us and gave us lawn chairs to put his machines on and he was so AMAZED at the trees. WE sat in the shade under a tree and the sun kept popping through so Tiff sat infront of him to block the sun from getting into his eyes. He didnt need his pappy the whole hour and 20 minutes we were outside! He started to desat so we brought him back in. Then Tiff had to leave around 7 pm and we were sad to see her go but so happy she was able to stay with us all day!!! THANKS TIFF WE LOVE YOU SOOOOOO MUCH!!!!!!

Well Thursday night he was pooped from all the fresh air and things he got to do and slept all night!

Friday was uneventful and didnt do much of anything...We got some great mail from the bears who care! Charlene and Becky BUnny sent Alyssa a big Canadas day package with balloons and flags and stickers and a bunch of stuff. Thanks guys. We got more happy mail from the Bears Who Care group you women are amazing I LOVE getting all the mail and showing it to ALyssa and Jacob.

Later that afternoon I was laying down with Jacob and Norma (Carol our Supers sister who started Jacobs trust) came by and said that I had to come outside for a minute. So I went downstairs cause Jacob was sleeping and she had a present for Jacob. Carol phoned Norma to tell her that we had Jacob outside in a little wagon and had all his machines with him on a chair and we had to sit infront of him to block the sun. Well I guess Carol saw an amazing big wooden wagon that was padded inside and had a big canopy over it to sheild the sun! Well didnt Norma run down to the craft store to purchase it for Jacob. It is made by the Meninites!!!!! Well this is no typical wagon. It has huge tires for easy riding that air fills them up and has padded sides and cushion inside and a big red canopy on it!!! Man Norma that was beautiful and amazing and God bless your heart for all you have done for Jacob and I. You are just amazing and I truly am blessed to have you in our lives and for all you do. You hold a special place in my heart! Thank you does not do you justice so here is a BIG HUG AND KISS FROM US!!!

Last night Jacob had more secretions than I would have liked and was fussy I think this is from his teeth cause he also had a bit of a temp.

In the morning I had to get Alyssa ready for her soccer tournament she had today and when Jacob woke up he was warm and sounded stuffy? I pray he is not getting sick. God only knows how Jacob would do with another cold the way his lung has been. I hope he did not pick something up from being at the doctors this week? Hopefully just his teeth. Well Alyssas dad came to take her to her game and she won a game and tied the other two. I am proud of you sweety. SHe ended up going to Ricks moms after the game and missed Allys Birthday party that Carol was holding for her granddaughter today. So me and mom brought Jacob to it!!! This was his second birthday party that he has attended. The first was his cousin Daltons, my moms sisters grandsons Party! We put him in the wagon and he was so excited to be there with the music and kids. I was a little leary of taking him cause he isnt feeling the greatest but it is in our building and not far from home just a minute or two to walk home. Across the lot. And there was only 4 other kids there and the rest were adults...me and germs! SO off we went and put him in his brand new wagon and I took tons of pics so I will get them developed and show them to you! He loved it and only needed his pappy for an hour and no real problems. He even got some balloons from Norma and we all know how much he loves balloons. We ended up being there for 3 hours and Jacob missed his nap but did really well and enjoyed every minute of it.

Then we came back home and the wind had picked up so much that just walking across the lot to my complex took his breath away so bad he desated into the low sixties. SO we put him back on pappy and he fell right asleep and now is napping and getting the rest that he missed today. He is sleeping soundly now and all is well.

Now news on his blood work yet.

On a sad note we lost another child to SMA type 1 on Thursday night. Gilly Powell was a beautiful little girl and was going to be 3 in Spetember. I hate this disease so much. She will be missed dearly and I am praying for her parents to try to find peace in knowing that she is in heaven and heaven has gained another beautiful angel. I know all the other sma angels will comfort her and hold her in their wings. Heaven is that much more beautiful now. I pray for your strength to the Powells. This horrible disease is just awful. I didnt know Gilly but her pictures are beautiful and she is missed by all. Visit Gillys site
Gillys parents have asked that when you think of and say goodbye to Gilly that we do so in celebrating Gilly's life. She does not want us to mourn her death but to celebrate her life.

Thanks to everyone for all the prayers and wonderful guestbook entries and even though I cant manage to get around to all the sites like I used to you all still come by to check on Jacob. Thanks and it means the world to us. I gained another friend Kristi. Could you say a little prayer for her she is waiting for a test to come back that may show cells may be cancerous. Please pray that it is not cancer and for her strength while waiting the results. SHe is sending Alyssa and Jacob a package. Kristi thanks for the emails and I am glad that Jacob has brought us together and I hope to keep in touch with you. Ill be praying for you sweetheart.

Love and prayers and blessings to all.

Angela

Wednesday, June 23, 2004 5:17 PM CDT

Sorry for not updating much like I normally do!

Hope everyone has had a great weekend, well and week also! Happy Fathers Day to those I missed in the guestbooks.

Ours was great Jacobs dad came to see him with his sister Kara and then went to Papa Bruces and Dales for supper then my mom and dad came over and after Jacobs dad came back for another visit through the night.

Allweek has been great and Jacob has been very happy and doing exceptionally well. He hasnt needed his pappy all that much lately and has been doing well.

He went to the docs today and am waiting for blood work to come back to make sure his diet is giving him all the right amounts of nutrients. I got a full blood work done including an amino acid profile. I cant see it being too bad if something is low I will have to add more suppliments to his diet. He is now 21 pounds!!! Whoo hoo he is a heffer!

Ill update more later when I have time!
Angela

Sunday, June 20, 2004 12 45 PM

HAPPY 10 MONTH BIRTHDAY TO MY SON JACOB!!!!

HAPPY FATHERS DAY TO ALL THE FATHERS HERE NOW AND UP IN HEAVEN!!!!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Saturday, June 19, 2004 7 35 PM

Well I dont even know where to start or where to begin? I have good news and bad news happy feelings and sad feelings. I guess I'll just start with right where Tiffany got here!!!

I was so happy to see Tiffany. It is such a great feeling when you know that your child is safe with someone other than yourself. I have other nurses that come by to help with Jacob but I know that with Tiffany she knows sma kids and I have seen her in action so many times that I totally trust Jacob with her. She got here and I filled her in with Jacobs happenings and she just played with him and I showed her where everything is and so on. It was so great to see her. She drove 2 hours to get here and said she could stay all night!!! The hours flew by then mom and dad got here because dad was coming with us to the cemetary. Then Jody got here to come also.

So dad, Jody and I got ready and I got moms cell to take and off we went. I dont even remember driving there. It seems like a dream? We did however get there in one piece and I managed to drive without going off the road. We met up with Rob who was going to be handling everything. We talked about if it was going to be just a plaque or an upright? I said I wanted an upright stone. So there was only 1 part of the cemetary that we could choose a place at. So off we went for a stroll to find the right spot... The right spot? I guess those words are appropriate. How can any spot be right? We walked to a place called The Last Supper and that is where we had to choose from. He (Rob) was really nice about it...I guess he knows the right words as this is a job to him. To me this is...just not right. Well Rob talked about each one of the stones that were up and knew everyone one of them and the details of the persons life. That made me feel good like he would know Jacobs details to someone else down the road. Then he talked about what types of stones and what the can do to them. He talked about the story of the cemetary and everything. He made it feel ok. Well then we walked looking for a right spot. I asked Jody where he liked and we both decided that a place under one of the Big Red Maple trees was nice. It is up on a hill with beautiful grass and the tree will shade in the summer in a few more years. So that was decided... We went to the office and this was the hardest of it all. We had to talk numbers... I told him what I wanted and then he has to do his job and tell us about what this and this and that costs. I hated it. I told him we have insurance and it would be covered but he had to do all this. I lost it and needed to leave the room at that point. This is a business to him and to me this is Jacobs life... Ughhh I hate this. Well we decided ona beautiful green marble stone. And the base will be longer on the sides so we can have lights on it for Jacob at night. His face will be engraved into the stone and it will have a poem (not sure what one so if you know of a respectful one that may be suitable 2-4 lines and is beautiful let me know) And he is being buried double depth so I can be with him some day and my name will be on the stone and then in loving memories of Alyssa and me and Jody. He is having a beautiful statues of an angel and a teddy bear with balloons on the top of the stone on both sides. They are a foot tall I think...not sure wasnt listening. We didnt need all the details of it yet as that is done after. I pray that this is all unnecessary and there will be a cure or Jacob is one of the stronger types of kids and will live years.

Enough about that it is a really hard topic to talk about.

We managed to drive home again and again I dont even remember coming home. I needed like 15 cigarettes but only had 2!!! Well when I got home I walked in and Jacob of course was doing great. It was 3 hours later and I only got to call once cause the cell did not work all the way out there. So he was still on his pappy when I got home and Tiffany said that he had not been off but for a 1/2 hours. So that made 1.5 hours that Jacob was only able to be off his pappy until 8 that night. Not sure what is up I think his muscles just cant move his diaphram as well. Anyway Tiffany said that she would help us to put Jacob on his tummy to see if he can tolorate it yet. Everytime I tried I got scared .... not because I would drop him but ifyou saw how floopy Jacob was and his tubes in his belly we just dont put them on their tummies. Most cant tolorate it. Well we took him off pappy and then made the pillows up and she managed to get him comfortable with lots of pillows. It just looked awful. Well he cried at first then we gave him his soother and then I got all sappy that this is the first time that I got to see my babies back. It has been so so so long since he was on his tummy. I cant even remember when the last time was. Oh it was such a pretty sight. His Oxygen went up to 100 all by itself. It is not regular that average kids 02 is at 100. He was doing perfect. She could hear alot in his lungs and then she got out the lotion and started to massage him. My Aunt Sandy was here at this point and she was infront of him and said that his eyes were rolling back into his head he was loving it. Man it was such a happy moment. We took pics and I videorecorded this in case we never get a chance to dothis again. He was really happy then he started to fuss a bit so we decided that it was long enough for the first time so Tiffany managed to get him back onto his back on the other cushion. It was jsut hard to see and I hope that I will be able to manouver him like that and give him some tummy time if and when he can manage it. But with moving him so much he needed to be suctioned for about a 1/2 hour. We put the pappy back on and the stuff that was coming out was amazing. Tons and tons of it. I am just glad he was able to get it out. Who knows how long it was in where ever for.

Then Tiffany had to leave and get going. BOO HOO It was sad to see her go. She said that she is going to try to come once a week every week. YEAH HAPPY DANCE!!! I was erally sad to see her go. Then Aunt sandy left and I put Jacob to sleep and then daddy left. I must admit I was really proud of Jody he has handled this well. So new to all this then going to the funeral arrangements then the cemetary. I know it is hard for me and him and he held it together well.

Well today was a different story. I am happy to say that it has been really great. He has hardly been on his pappy at all. Big difference from the last 2 months where he hasnt been able to come off at all. I think the tummy time moved whatever was blocking his lung? His sats have been great and he has been great. Jacobs dad came today and spent most of the day with him. He can manage to get so many kisses from Jacob. Me I think I have worn them out!!! He is great and being an angel. I didnt sleep well last night I think because of yesterday. At least it is done and over with and I praying that it will not be needed until after I pass on. I pray for a miracle and hope that all the sma children will be cured tomorrow.

Well this is long enough so I hope that everyone is well and know that I think of you often and will stop by soon to visit your sites.

Angela

Friday, June 18, 2004 10:09 AM CDT

Well today is the day.

I am only going to do this if our favorite nurse makes it today. Tffany is coming from Toronto to help with Jacob. I trust Jacobs life with her. She has been with Jacob everyday we were in Toronto almost. She was with us the day of his surgery and even made sure she was there the whole next day. She was the one who helped most getting Jacob used to his pappy and rocked him in her arms many many hours through the night so I could sleep. She is going to try to get here and I will show her where everything is and she knows how to do everything I do as she is the one who mainly trained me. I know Jacob will be safe with her....OMGosh she just phoned me...lol She is in the parking !!!! SHES HERE SHES HERE!!! HAppy dance!!!!!!!

Gotta run we go at 4 so pray I make it through!!!!

Thursday, June 17, 2004 10:37 AM CDT

Yesterday was really really really and again REALLY tough! Everyone kept telling me that I should pick up the phone and call the funeral home and try to make the arrangements for Jacob. I have been putting it off for many many months now. I thought it felt more like giving up.
But a few days ago I thought long and hard and decided it is not giving up. It is preparing for what I most dont want to happen but most likely will. I picked up the phone and made the call. That was tough but yesterday when they came to the house to talk was really really hard. I am now glad that I did because of all the things I want for his funeral I wouldnt have been able to have if I had not have prepared for it.
Making funeral arrangements for your child is truly just plain and simply wrong. IT SHOULDNT HAPPEN THIS WAY... But these are the cards I have been dealt and am dealing with. I asked my parents to be here for support and Jody Jacobs father. First we talked about the newpaper article and that was fine...sort of... then we talked about where and what to do. I want it to happen here at home. I want to be able to hold him again and have family here and bathe him for the last time and take his feeding tubes out then hold my baby up on my shoulder. I havent been able to do this since February. Man I would give anything to be able to hold my baby again. Just not this. That is when I lost it-- talking about what I would like to do after he earns his wings. Ughhhh. Well we then talked about what to do. I have dont have to call the coroner b/c no autopsy is necessary. A nurse can come and pronounce and then have our special time then call the home. It is going to be in a church. And the funeral at a beautiful cemetary Rosemount. I go Friday to pick out the plot. I want to make sure it is going to be the best place for my angel. I dont want him in the childrens part I wanted him in a regular plot and I will get two...He is being buried double depth in a vault and then later I will be placed on top of him. I think it is only natural for me to want to be with him down the road. He is only a baby and should be with his mother. The extra one is for my husband God willing I ever get married.
I asked that it be mentioned that for the wake only people can wear bright and happy colors to celebrate Jacobs freeness of SMA. Also to have a helium tank at the funeral to have everyone sign a balloon and put in a sack then release them to him in heaven with all the angels. If I had not prepared it would have been hard for them to make all this happen. I want as many people to come as would like. He is a communiy baby now. Has been in the paper so many times and on tv so many times that if anyone would like to come great. To me the more the better.
His casket is just beautiful. And I am going to look at monuments and want a special poem placed on it...notsure what one yet. Also I want an angel attached to the monument. So I have to look at my options on Friday.

I am sorry if this is really hard for some of you to read. But this is my journal and I need a place to put these feellings.

This was the hardest thing ever. How do you feel ok about making the arrangements. You just do it. One less thing to worry about I guess. I pray that this will all be unnecessary and not needed. I pray for a cure for Jacob and all the other sma babies.
Pray with me.....

Angela

Tuesday, June 15, 2004 4:20 PM CDT

I ADDED PHOTOS TO THIS PAGE AND THE PHOTO ALBUM!!!
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Added pics today Wednesday!!!!!!! LOL OK no more I promise!!! I get pic happy with a scanner that works and new photos!!!
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Well what can I say?
THANK YOU for all the well wishes and prayers.
I believe that people can change and I hope that he will. So far he has done nothing but prove that he is truly interested in Jacob and I know he loves his son. I pray he will grow to learn to love him and learn all Jacob has to offer and not the things Jacob cant do but all the wonderful things he can do.

Guess what? Tonight I will be abel to add pics!!! I am soooo flippin excited to be able to add pics of my baby boy. So Not sure how I will be able to add them? I will have so many to show. That zeo cast thing I have on the page is frozen and I cant make a new flick. I have tried over and over so I think Ill add them to my photo bucket and just attach them to this page and change them often. That means that this page is going to be even bigger. Once Jacob has an sma angel website I will be able to add many many pics to it! Until then Ill deal with this website. It is really beautiful! I cant thank the angels enough for all they have done with it!
So for all you keeping up with Jacob STAY TUNED!!! As soon as it is fixed I will scan and update. Might not be till the wee hours of the morn so hoping all goes well!

Jacob is still doing really well. Ill have to look back into the entries to see when the last time Jacob was really sick I cant even remember. If it were not for this lung thing going on he would be perfect! He still needs lots of bi-pap time but as long as he is happy and thriving like he is that is ok with me.

I finally got a pic with his little tongue out and then got one with his finger on his lower lip and smiling. I know it is going to be priceless!!! Those are at wallmart being developed so as soon as those come back I will get them to you!

Thanks for all the congrats to alyssa. She has been sooo busy lately that I havent been able to read them to her yet. Actually she reads them all herself. She is the top reader in her class and way above average for her age! She just keeps making me more and more proud everyday!

Jacob had a long bath today. And he was even moving his legs a little in the water! He has not done that in some time also. I think this Amino Acid diet has helped Jacob thrive. If it were not for the angels before Jacob we would not have this special diet to help our kids. Also a huge thanks goes to our very own dietician on my chat Tracy! She and another mom work long and hard to work out the diets for our kids and also have sma children. Where they get the time I would never know! Thanks from the bottom of my heart!

Well many of you have asked what a day in the life of Jacob is really like. And mommies days. That would be a huge journal so after a day or two I will just have that as an entry... This one is long enough!

Again thanks for all the prayers and hopes. Jacob just keeps bringing special things into my life everyday -- but mostly I would have never had the oppourtunity to meet any of you or learn all I have learned if it were not for my angel. So thanks for all the friendships I have made and I am so glad this little box on my desk has all my friends in it! Technology!

Prayers and sweet dreams!

Angela, Alyssa and Baby Jacob

Sunday, June 13, 2004 9:19 PM CDT

I totally appoligize for not being able to update as often as I usually do. I have had alot going on this week-- more on that later.

Jacob has really been doing really well. I know this email is going to be all over the place, -- it always is when I dont update for a few days!

To start I would like to congratulate my daughter!!!

Alyssas North Minister Baseball team had the playoffs this weekend. It was all day on Saturday. Her last real game was on Wed night and remember me saying I felt sorry for her cause she just couldnt connect with the ball? Well Wednesday night she not only got a hit but she got a single and then a double run! Talk about a happy girl when she got home that night! She was so proud of herself she worked real hard this year -- her first year at baseball and FINALLY connected with the ball!!! Yeah Alyssa!

Well then Saturday for the playoffs well wouldnt you know that boost of confidence helped her to hit a run EVERYTIME she was up to bat. Not only did her team win they won the whole thing!!! 2004 Championship Baseball Players with a gold medal and all!!!!

CONGRATS ALYSSA!!!

I got a nurse for an hour for 1 of the 4 games she played and they won that game and I -- and Alyssa was so glad I got to see a game. Mom and dad took her from 730 am to 530 pm. LONG day! I had the nurse come for the 10-11 game so I could see it and mom came back to stay with her and Jacob. I am so happy for her. This is only the 6th time that her team has won the whole championship ever and she was on the team that did it this year!!!

Now Jacob has been really great for the last few days. Still having trouble with that lung -- I think it will always be like that and he will need his pappy more and more with the progression of the atrophing muscles. I am fine with it though. He still smiles and plays and laughs and sticks his tounge out at me so I know he is still really happy!

But do you think I could capture this on tape or camera? NOPE! That little guy stops doing everything as soon as he sees either one~ I am trying so hard to get these on tape and hopefully I can put them onto cds and then figure out how to put them on this computer somehow! But that will have to wait.

Jacob has been having a bit of drainage come out of his stomache tube-- not sure why-- but I have been keeping a close eye on it. ALso he has been having some strands of blood also come out of his stomach tube. So I will be calling the pead in the morning to see if he would like to see him or what he thinks may be going on. I pray nothing too serious is happening. I dont like the thoughts of his stomach bleeding. I will let you all know what the call is.

Well onto other things. I honestly dont know what to write about this. His father.....

I havent mentioned him because of embarassment and not knowing what he wants me to say. I have not mentioned anything about him at all. But through his conversation with me today I guess he wishes to have me tell all about our situation and such so here goes as nicely as I can!

We split up while I was pregnant because we just could not make it work. He was around when Jacob was born and helped with the delivery. I prayed and begged him to stay at home with me and help me and stop hanging with the people he was with but unfortunantly he makes the bad mistakes and did not listen. He ended up in prision when Jacob was 3 weeks old and just got out to a half way house on Monday. He came to see us in Toronto Mon night and then caught the bus and came for the day on Tuesday. He has visited everyday since except last night because at 9 I wanted to go to bed and not have him show up so late. Today we had a bit of a squabble. He looked at his website and thought I should have pics of his family with Jacob. He is right I probably should. I now know how to add more pics...BUT my scanner has been broke for weeks now and I cant add any yet. If he wants some I have no prob adding some but when I first did this website this was MY JOURNAL about OUR son and for the last 9 months I have made ALL the decisions and I DECIDED that I wanted those pics up and thats all I added. He thinks that I dont include his family as much as I should. Well if you read back if Nanny Cheryl or Aunt Kara or Papa Bruse or Dale come over or anything I put it down just like my parents. If it is not often well maybe they were busy that week or two and did not visit. Many weeks went by that his family was busy andthey really are really busy and could not come but they always phone. I says what should I put down who calls me everyday too! Well lets say he left early and we are going to work out a schedule that he comes over a few hours a day or everyother day during the day to see Jacob. I am being nice and trying to not ramble and cause problems like he says that I do all the time so when all of you read this know that he asked me to tell you all what was going on with him. He wanted to know why I never said anything about him--- well I totally was embarrased and angry and upset that he was there and I am here and doing all this myself. But looking back it was the best thing for him and me. He is a different person now and says he is changed. But I have heard that before and WILL NOT get back into that again. My one and only love is Jacob and I have NO TIME for anything else.
Sorry for going on and on but he asked me to. Mind you I could go on and on more but I said I would be nice and I have no reason to be mean now. His family have been totally supportive of me and Jacob so far. His mother and father and of course Dale...all the calls you make to me and listen to me. And his sister Kara stops by when ever she is here in town. So I hope when you read this you are not upset with me for putting this down-- he asked me to@!!! And was mad that I hadnt...

Anyway I am going to hit the hay I am tired and stressed!
Night
Angela
~~~~~~~~~JACOB LOVES THE WIGGLES!!!~~~~~

This is too cute!!!

Thursday, June 10, 2004 1:00 PM CDT

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I HAVE ADDED SOME NEW FRIENDS TO OUR LIST FOR THOSE OF YOU THAT VISIT THEM
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Ok where to begin?

We are home!!!! And I couldn't be more excited to be here! First before an update I think some thank yous are in order.

First and foremost I want to thank you...yes you....all the people who continue to come to my baby bears site and check up on him and pray for him and leave notes and prayers and a word of hope in his guestbook! THANK YOU so very much, the power of prayer is wonderful. THANK YOU!

Also to the ones who phoned and offered an ear or a shoulder or advice. Thank you from the bottom of my heart. You are wonderful.

To Shania Rapport. WOW is all I can muster. WOW WOW WOW!!! I have been meaning to add Jacobs website to the link list above along with many many others just have not had time yet! The package was wonderful. Just wonderful. Jacob loves ALL the toys and movies. I cant wait to do the handprint. I have never heard of the Baby Einstein movies. HE loves it. We have watched it several times now. That and the Wiggles movie. Those two I see being worn out very soon. I have to find some more soon!!! That book is very special to me and will stay very close to my heart. And to have it signed also! Shania I cant thank you enough for all you have done. From listening on the other end of the phone and sending Jacob a package now. Thank you truly thank you. Like you said I know your Jacob is watching over my Jacob and playing together all the time. That was just great thanks again!

To the Bears who Care. THANKS FOR ALL THE MAIL! We love going to the mailbox and seeing all the happy mail from the bears! Alyssa loves getting the stickers and all the flowers we were sent we are going to make a special garden for Jacob and include all the special ones we received. Every time I have tea I think of all of you. Thanks for all the support and ears!!!

SMA support is ALWAYS included in my thanks. They have helped me help Jacob to come this far. IF not for them and the phone calls and emails and hours on end they sat infront of their computer helping us through the current crises at the time. Thanks Laura for the Vest now travelling with Jacob will be easier and more safe!

Charlene and Becky thanks for keeping everyone updated. It was great to meet you and Alyssa says thanks for the package to her. You guys are great and I am glad to finally put a face with the name. Nice to meet you!!!

Ok now for an update!!!

The ride home in the ambulance was great. It was hard leaving the hospital as much as I love leaving I always have the wonders if this is the right choice? Will I be able to manage all these machines at home? WIll I know what to do in a crisis? Can I do it? But I feel confident today like everyday when something happens that I can do it like I always do it. As scary as times may get I seem to always not panic and get through whatever happens andJacob comes through smiling and laughing like always. He is my hero and my inspiration to keep learning and keep tring things and keep researching to find something else that I xould be doing.
If not for his smile and laugh and great nature I dont think I could have come this far. He makes me want to see that smile for years to come. And I feel that he wants to be here and have me fight everyday for his life. I know he is happy and that is all that matters tome. That Jacob is happy and comfortable.

Since we have been home I have been spending time with Alyssa and Jacob. We have just been cuddling and hugging and snuggling. Alyssa was so happy to see me. I missed her so much. If I could keep her overnight in the hospital with me I would have both my angels with me alyways. I hate not being here for her but I know that she understands that Jacob needs me more then. Mom stayed here with her to get her off to school and her games and things.

Jacob is doing great. He loves the new pressures but that lung still wont stay open. Just doing lots of CPT and physio and coughing and TONS of bi-pap time. He loves his pappy now. But like always he will problably tell me when he is better and wants it off. He always does when he feels better. He is such a beauty. Hopefully my printer and scanner will be fixed soon so I can update some photos. I know you all would love to see them. The ones on here of him are 2-4 months old. You need to see him now!!! He is soooooooooooo big now.

Not much to update just that he is doing well at home and we are so happy to be here. Thanks to everyone for all the prayers and support you have given us. You all have been so great to us. Thanks

I will try to update his links page and get the rest of the friends that we visit on there. Also I will TRY TO come by and check on all our friends. Know that because I cant sign the books as often as I used to that I think of you all none the less. I pray for all the sick children. I willl see you all soon K
Hugs and prayers to you all!!!!

Angela, Alyssa and Baby Jacob
(I should stop calling him that eh? He is getting to be a big boy now!!! Nope cant thats his name and stuck with it!! LOL)

Monday, June 7, 2004 4:41 PM CDT

Cant stay on the nurses comp long...

Today was again on of the hardest days of my life...

We must have had 100 people (nurses, docs, RTs, Nutritionists, Physio, so on and so on) Today to see Jacob. We talked about his progress and the degress in Jacob. Here they feel that Jacob will not be able to keep up with all he has been through at this rate. They said Jacob may not last 6 months to 1 year. I am trying to not let this bring me down. This is nothing new that I did not know. It is just really hard to hear someone tell you that your baby is starting to get weaker and weaker. I broke down today. I was alone most of the day and had many many things go wrong and happen through out the day. It was a tiring and hard day. Also we only slept from 5-8 this morning. Really tired. Jacobs tube change went well. His bowels seem better and we are slowly starting food again. His TPN has helped emenesly with his energy.

I tried so hard to not get upset today. It was really tough by myself getting told that your baby is given a time line and not to expect him to make it another 6 months to a year. I tried to not get upset but I broke down...

Charlene and Becky came to see us today it was great to put a face with the name finally. They brought Jacob his favorite thing in the world!!! A BALLOON!!! He has played with it all day.
Thanks Char annd Becky! You are just great and they left a package for ALyssa.

I will update when I can...

Sunday, June 6, 2004 11:14 PM CDT

Just a quick update...

Jacob is finally doing better...after a 2.5 hour ultrasound last night they decided to listen to me and believe that the problem was an intussusception. Also they noticed that his bowels were very swollen and they thought that it was because of all the tube changes that he has needed lately. SO they decided that they should take out the gj tube and wait for 3 days to put the new one back in. So he was not being fed just an IV drip. I bitched and chewed and they finally have him being fed by TPNs so at least he is getting all his nutrients now. It was getting scary cause he was getting so weak and could not move much or talk just slept all the time and had no energy. Now he is back to flirting with the nurses and laughing and being a little baby bear again. If you would like to call we will be here a few more days the number is416-813-7600 ext 3938

Hope that tomorrow they will give him the gj tube back in place and slowly see if he can tolorate the feeds again. His bowel has to be less swollen in the ct scan before they will put it back in. Thanks for all the continued prayers and support.

Char THANKS for keeping everyone updated for me. I cant wait to meet you and Becky tomorrow!!!!!!!
You are going to just love Jacob when you meet him....
Hugs to you and the Bears Who Care.
Mom and Sandy thanks for staying so late I hope you got some rest.
Alyssa I was so happy to hear your voice today...Jacob lit up like a lightbulb when he heard your voice tonight, He loves to hear you talk on the phone.
I love and miss you sweety!
I will update you all when I get a chance!

Keep praying and thanks from the bottom of my heart

I got to have a bath tonight while Jacob was sleeping and we have been sleeping TONS!!! This trip or stay ended up being the well needed break that I needed.

Jacobs father is sopossed to be coming here tomorrow. He has not seen Jacob since his surgery in March and before that it was when he was 3 weeks old.
I hope and pray that this transition will go well.
I just have to learn how to share my baby bear with him and things will go fine. I know he misses Jacob and he can now help out with things.

Prayers for a happy tomorrow and gj tube insertion goes well and we get to go home soon

Ange

Saturday, June 5, 2004 6:58 AM CDT

Well I thought Jacob was getting a little better because he seemed a little happier and could be off his pappy for a bit at a time. I got to give him a bath yesterday (It is scary cause he is not on pappy, not on pulse ox, ans upstairs away from our secure livingroom) Anyway I now bath everyother day instead of 2-3 times a day for pleasure!

He loved his bath but always near the end he started to choke so it was cut a little short! At least all the sweat and smell from my angel was washed away. I truly will always remember the smell of his sweaty hands for the rest of my life. He has his own sweet sweat smell. This may sound gross of weird to all those who are not mothers but your baby truly has his own smell and it is only intensified with sweating. Well Jacob sweats all the time and I do love the smell of him. I will kiss his hands and his cheeks and the smell of his hands and hair makes me smile every minute I do it!!! Sorry off topic there

Well back to Jacob now...he is struggling to keep those (yup those) lungs open now. His right is also giving him troubles now too. Also guess what is coming out of his stomach tube.....ALL OF HS FEED....everything he received last night and today came back out plus some gastric stuff so he is nearing dehydration again. I am going to run pedialyte for a bit to see what is going on (Hoping that is will uninntessuscept) Not even sure if that can happen.
Why does my poor baby bear have to deal with this on top of sma????????????
How the heck am I going to get to Toronto now? He needs his pappy and he is so weak I cant take him in my arms like he is now? But I will cause I am his mom and I will see he gets to the hospital to help him. I just know that they will keep him and want him there. Then he will get sad and be even more miserable and just wont be good.

Continue to pray for baby bear and if I can get online before we leave of whatever for an update I will
Thanks for the prayers...
Oh dont worry if I have to go to Toronto Auntie Charlene will update the page for me!!!!! She offered before and I know that offer still stands! (right char!!!)
TO the Bears Who Care I LOVE ALL OF YOU!!!!!!!

Ange

Thursday, June 3, 2004 11:01 AM CDT

Again thanks for all the prayers to all of you. The emails of encouragement the on line cards being sent to Alyssa and myself with Jacob! Just great. When we need a boost I just go online and usually get a big smile! THANKS!
Also to the BEARS WHO CARE! This is a group the visit Canadian Children and offer them prayers, smiles and hope! They are just amazing. We started getting happy mail from them and Alyssa got some flowers to plant! She was so excited to get mail! Thanks so much. I had a cup of that tea and thought about you "Aunt Char"!!! So all are so sweet and blessed! I call all of you Earth Angels!!!

Well sorry but I have no great news with Jacob. He has been extreamly tired and not doing much of anything. He is completely bi-pap dependant now (meaning that if off he crashes). I hope this is not perminent. I hope his lung will stay popped open... His left still has almost no air entry in it and the right sounds junky. I hope not from the little bit of vomiting lately. This is so hard to see your child struggle to breath. He looks at me like he wants me to hold him and make him better. I cant even pick him up anymore unless someone is here to help and then suction him once in my arms---cause he chokes---and he needs to be on pappy to be able to hold him too. I just cuddle beside him while he is on the couch. I ususally just sit on the floor and lay my head beside him and sing to him and talk to him and massage him and play with him. Sometimes I lay on the couch beside him but this puts him to sleep so if I want to plaY I cant do this.
My poor baby bear...he is so weak now.
He will come around right God. Hear my prayers and feel my tears....hear me now! I NEED my baby better...I NEED my Jacob to get stronger...I cant do this without him....HEAR ME NOW I am praying for strength for Jacob and hope and strength for myself. Help us, help guide me through this trying time in our lives. Give me strength and courage to make it thtough and know what Jacob needs and wants now! AMEN

Well enough of the sappy stuff...I got some sleep and ALyssa has been helping with Jacob more. I think deep down she knows he is not well. She sees him on his pappy now all the time and he used to only wear it to bed which was always after her! But she has been reading to him and of course dancing for him and talking and playing with him.

I hope all the others kids are doing well....I pray for all of you I am going to try to visit some when Jacob stays asleep for a bit! Hugs and blessings to you....

Ange

Tuesday, June 1, 2004 8:28 PM CDT

Sorry for not updating in so long....everyone is emailing and worried.

Jacobs day was not any better. He did crash a few times but not as bad as the last few days. His 02 is holding when he is on his bi-pap. I am praying that his lung will get stronger and he can make it through this current struggle. He sure is a fighter.

His physio did come today with yet ANOTHER disappointing stroller that will NOT work for him and cant accomidate his machines. They phoned one of the big rehab places in the area and they stated that they thought type 1 kids should either be in a hospital or stay at home and not to need one to leave the house. WHAT???? My child does not have the right to venture out in the world and see all he can see in his short little life? THAT IS AGAINST CHILD RIGHTS to not ensure that they have addiquite ways to leave the house. I got upset yet again that I am again on my own to get a wheelchair stroller that can help me help my child venture out for walks...go into the kitchen with me to watch me FINALLY do the dishes...go to the mall (out of flu season) SO on and so on. I am appalled that I have to have yet another fund raiser to help my child? Do I not live in CANADA? Should not he be able to see all he can see?
Why do I have to raise money to get what he needs. ADP will pay for a stroller that WILL NOT help him and may potentially KILL HIM as it is on an incline and does not carry all his machines? THIS IS SO FRUSTRATING!
UGHHHH

Anyway I wanted to let you all know that I am thankful for all the prayers and continued support from all of you. I have never met most of you and yet I feel so close to all of you. Thanks

STORM HEAVEN and pray that Jacob will make it through this hurdle and we can enjoy the summer and smell the flowers and swim and play in the grass and watch the clouds and go for walks and visit the zoo and many many more things.

Prayers to all I am sorry I cant visit but I will make up for it when Jacob is better! :)

Hugs and prayers to all

Angela

Monday, May 31, 2004 10:19 PM CDT

Well I was hoping to be able to tell you of better news tonight---not going to happen.

I am going to warn all of you this is yet another sappy and sad entry of mine....venting I feel this is the best therapy for me...

Yesterday was really bad...and so was this morning.
My nurse came at 8 and he seemed to be ok for a bit. Wanted his pappy all the time and just did not seem himself when he woke up. Like he was not "there"? Just not my same old Jacob baby bear. Well we were just discussing that he is always great when she was here. That he only has problems when the other nurse was here. She was saying that she loved being here and thought he looked good...just not great air entry again into his left lung. Wish that bugger would pop open and stay open.

Well not soon later he crashed bad again. Not into the low 50s this time but low 60s. But his heart dropped real low also this time. Also his g tube is still draining milk. Not alot but still more than nothing. About 30 mls which would not worry me if it were not milk. I will watch it to see what more comes out...if more milk comes out back to Sick Kids we will go. Then he crashed again tonight...
I think he is really sick... He cant be off his pappy for very long at all. It seems like life support to me... Do I stop and let him go? How do you make that kind of decision.
When is it too much?

I have been struggling with my brain activity lately these last few days. Meaning that it is racing and racing. With questions and worries and wondering...

Always thinking Jacob has SMA
Jacob has SMA
Jacob could die Jacob could die
Is this it? Is this the last time to see my baby?
Terminal illness terminal illness
I need to cough
I need to suction
Does he need CPT or a Neb treatment and of what? Sailene...salbutimol...Pulmicort?
Am I doing too much? When do I stop
Does he want me to turn off his machines?
He is not smiling much anymore is he too tired? Does he want to leave me now?
Is his journey coming to an end?
Is he is pain should I give him tylonal..motrin...codine...morphine?
Jacob may not make it though the night.
He needs his pappy
I need to sleep
I am tired
I need to do laundry, vaccuum, dishes, cook, get groceries, help.....
I need to learn more research more...I need to check in on our friends...
What is the support group talking about today?
How is Alyssa? Does she still love me? What am I not doing with her that she needs me to do?
Take Alyssa to her sports games...cant cant leave Jacob
Mom needs a break
Mom looks tired too
Jacob is sick...oh no did he aspirate? Is his lung collasped....

All the while trying to run a household and keep my family together...and not cry and not freak out.... try to stay happy for Alyssa...not cry not cry....
I cant let her see me sad too
Jacob might die

Anyway that is a BIT of what goes through my mind ALL THE TIME!!!
See why I think I am crazy sometimes?
Ughghhhgh
Well I warned you didnt I

I am going to TRY to go to sleep now!
Thanks for listening....lOl

Angela

Too much coffee today!

Here is some roses for all of you!

Sunday, May 30, 2004 10:27 PM CDT

Well yesterday showed that Jacob is still having a few problems with his bowels. His g tube is still draining more fluids than I would like...I am praying they have not intussuscepted again. Please Please Please let this not be another intussusception again...

He was really tired yesterday and needed more time on his pappy than usual.
He slept from 12 to 1130 am this morning then when he woke up he crashed real bad again. He went down to 52 for his oxygen level for about 2 minutes. This was really scary, it felt like an eternity. I coughed him, suctioned him, coughed him, suctioned him...did CPT and that was the only thing that could bring his 02 back up was to pound on his left lung. What was weird was that I can still hear air entry into it so I dont think that it is collapsed anymore? He desatted about 4 times and I put him back on his pappy (bi-pap) at noon and he slept until late afternoon on it. Woke up pretty happy just tired and not wanting to do much of anything.

Pray this is not to major...I dont know how much more of this I can take....

Alyssa did really well in all 3 of her dance routines this weekend at Showplace theater! Mom gave her roses for her last performance and she was thrilled!!! My dancing diva!!!

Please continue to pray for my little boy he has been through so much lately I dont know how much more his little body can take. He is really not doing very well lately.....

Thanks and blessings to you all~~~~~~~

Angela~

Saturday, May 29, 2004 1:14 PM CDT

Well I have really great news!
Jacob has been doing exceptionally well these last couple of days. Just lots of bi-pap time and resting!
I think he is on the mend. He is having problems having a bowel movement again though but I think with the lactulose it will help!
Jacob just learned how to say no! Well not say no but he moves his head back and forth back and forth for nonono!!!
Jacob did you poop NONONO
Jacob are you tired NONONO
Jacob anything he nods his head NONONO!!!
Way too cute. He may have lost lots of his arm movement but he still has the ability to manoever his head side to side pretty well!

Alyssas dance rectial is this weekend. Thursday night was the rehersial and they did great. She is in Premier Studio of Dance and they have been working all year long on this routine! She is in Jazz hip hop. I got a nurse and mom to stay with Jacob so I could take her. As he was and is doing so well! They did really well!
Last night was the first show and it is 3 hours long so again I got a nurse for the night and was able to go to the show with her! She was so happy and proud that I was able to take her. I was so proud of her. I got mom, Shannon and the nurse to stay with him.
Today her show was at 1 and 630 tonight. Mom took her today and she will again tonight!
My little dancing girl is so great at dance she is at the front all the time and the other little ones follow her lead and she is just amazing!
I wish I had the time and money to put her in competitively. She wants to be able to dance like the other girls and she really is great at it. She is always dancing and listening to music and making up routines. It is too much for me to put her in it for competitions. Oh well some day!
Thanks for all the prayers and support!
Please sign the guestbook so I know you were here---- even just to say hi!

Angela

Thursday, May 27, 2004 3:10 AM CDT

Really long update by an EHAUSTED mom! Bare with me please this may be all over the place!

Ok Monday Jacob was having the same problems as Sunday. Then on Monday night his g tube started draining tons of bile again. So I knew his pain was coming from his bowels again. His condition is actually called Intussusception- this is where the bowels actually fold over itself like a vaccuum cleaner estension hose...hope that helps! They say it is really painful and happens most times to kids 5mths to 1 year. Poor Jacob cant tell me how much pain he is in. But I knew something was bothering him. Well they say 30% of kids have this happen quite often. The odds are again against us as this has happened 3 times prior already! Why it is so scary for Jacob is because he cant defend his airway like other kids can. So when he starts to vomit and we are driving like mad to get to Toronto to the only hospital that can help Jacob (with him in my arms) on a busy highway....well lets say very scary times. All they have to do is pull the tube out and the bowel unravels and another tube is placed.

So after they fixed my poor baby again we had to wait awhile until we could leave so we did not hit the bad traffic. I thought well why not get a chest xray while we were waiting. I had to go to energ to have it done but they were really great and put Jacob into a room with a boy that got hit in the head with a baseball bat by a chinese man! At least he did not have anything contagious so I said ok. Off we went to xray rather quickly.
When they came back I only heard the OR Doc say start IV and admit....
UHH UNN nope I told them they are not starting an IV unless he had an infection of some sort. It is harder to leave with an IV sticking out of his head.
She said that his whole left lung had collapsed. I was in complete shock and disbelief. WHAT? How did that happen. I thought he may have been aspirating before and may have with his vomit but what?

So they wanted to do all this stuff with him. Well I said no way. Draw blood check his C02 levels and everything else and then we will decide what to do. If it is fine I wanted to go home as his pappy and cough assist was not with me and he needs this to inflate his lung again.

Blood came back fine so no IV needed! His White Blood count was a bit high....duh from the lung probably!

They said that it was unsafe for him to go home! Really? So I guess you have changed you mind about him not needing intervention? Originally they told me to go home and love Jacob! They wanted him to stay 1 night and see how his lung was in the morning after bi-pap. Well I said that only if the pressures were what I had them at home. They agreed so I agreed to stay 1 night but other than that we were going home as I have the ICU in my apartment livingroom! I can treat him better at home and he may catch something there.

Upstairs we went. They brought the bi-pap up and the settings were great. As soon as it was on tons of stuff (mucus) was shooting into him mouth from his lungs I believe. I started to suction! They are great now they let me do everything...even administer his meds!!!!
So I was suctioning and just could not get the mucus out. The RT thought she should try and also use a bigger catheter. So as she was deep suctioning ( I never do this very rarly)the catheter started to bring out blood? Why? It has never brought out blood ever and I have suctioned more times than I have eaten lunch! She thought from his lung but I believe that with the bigger cath and the agressive deep suctioning his throat must have been bleeding? Who knows I am just glad to say no more blood!

Well after most of it was brought out and we played around with the crappy mask that chewed his face we managed to get a great seal on the pappy! He actually snored for the first time ever! Where was the videocamera when we needed it. Well he slept great all night and was well rested in the am.

I got up with him in the morning when he woke and turned the pappy off and went to change him! Oh my talk about diareaha!!!! Also a big puddle of pedialyte on the bed under his new GJ tube!

See there is always a reason that things happen the way they do!

Well he needed another GJ tube change! Poor baby. The tube was a dud! When we finally got to go and have the tube changed in the afternoon! They looked at it. Well actually the DR that did the surgery looked at it and said it had a little hole! She got out the old super glue! YUP!!! Superglue! Instead of making his poor tummy sore again she said "It is not too scintific but helps in a pinch. Did it before!" I will be forever thankful that he did not need another change. His poor tummy is so sore from all this happenings!
Lets pray that this one lasts longer than a couple of weeks!

Well went back to our room and packed our stuff and started to walk out! But you are not discharged yet they say~~~
Well we are leaving and walking out now so if I have to sign anything get it ready now cause I told you I was leavign!!! And we did we left...I did not want to get stuck in the supper traffic! Poor mom did not sleep at all at the hospital. MOM you are amazing I cant thank you enough for all you do for me and Jacob and Alyssa!
Oh in case you were wondering Alyssa was at my dads then Shannon picked her up until we got home tonight!
Jacob talked on the phone for the first time ever with Alyssa! He always just looks at the phone and smiles when someone talks to him. Today he talked to ALyssa with a big smile on his face! Way to go Alyssa you got to be the first person Jacob had a telephone conversation with!!!

The best thing about being at the hosptial again was I got to see all his nurses and docs that we love to death! Tiffany was just great we FINALLY got to see her again. They could not believe how big he has gotten!
I LOVE YOU TIFF!!!
His Dr Maclusky was great like usual and we got to see Sue and Andrea! They Docs right hand girls! They were going to look into the stroller issue for us! Thanks
Also Melanie! I am so glad I got to see her again. She did CPT with him and let me have a break! She puts him to sleep with her signing and hard thumping!!! I missed you MEL
I am so glad to be home he is resting on pappy now!

Thanks for all the prayers and continued support!

I love you all so much and Jacob is sending many kisses your way!

Angela

Tuesday, May 25, 2004 8:36 PM CDT

PLEASE PRAY

His bowels inticecepted (sp?) again and he needed a tube change...we are in hospital now...he was vomiting and I asked for an xray also to see if he aspirated or not...his whole left lung is collasped...

Not sure what we are going to do so I will update when I can

Sunday, May 23, 2004 10:56 PM CDT

I am asking all of you who continually check up on us to pass this website to all you know. Send this to everyone in your address book and tell them to learn something new today. Ask them to reach into their hearts and learn about a disease that affects children and can happen to anyone. Tell them to tell everyone they know to learn about SMA and that these children can and do live happy lives. There is no cure but there is some form of a treatment. There is a small shadow of hope. I am always trying to help others learn that no we dont have to do nothing. These children can be kept comfortable and life quality lives.
Please let everyone you know find out about the quiet killer our children suffer from.

I have found a new support system. I have chosen to have faith that He has a plan for Jacob and He will protect my angel. I am daily making decisions about the treatment for my son. I have had to learn everything about his disease online, read about his disease, beg, fight and scream for the machines he needs to keep him comfortable. I talked to many many people who either lost their angels to this disease or are fighting along with me to keep there children happy and healthy. I have had to have fundraisers to get these machines. I have had to go to the newspapers and television stations to get the info out that Jacob and I need help.

I am forever grateful that Jacob is doing really well right now. Cole is still not well. He is really fighting for his life at this very moment. This scares me as I have walked this path before with Jacob and with him having this disease I will walk that path many more times. I have come to understand that Jacob will die from SMA. He will not live to go to school, ride a bike, graduate, get married or have children of his own. I accept that. I am just scared. I have never seen someone die. Let alone my child. I would have never imagined me sitting at a computer writing on my sons internet page about how he is doing. I would have never imagined that I would one day have to put my child to rest.

SMA is the most horrific, horrifying, terrifying, saddening, frustrating, upsetting, maddening, stressful disease there is? Is it? Who knows. There is no cure or treatment.

I went to my moms (nana) today for the afternoon and for supper. In Canada this is the Victoria Day long weekend. The day was great I got to lay with Jacob on Alyssas bed at moms house and we got to cuddle. It was great---the first time I have slept in a bed in months.
But while we were there Jacob was---not choking---but struggling to swallow I think. He was getting really sweaty to the point where it was dripping off him in seconds many times today. I was scared. I think he is aspirating into his lungs. I think he cant handle any saliva at all in his mouth or throat. SMA is winning another battle. I know Jacob cant eat ever again but now he is really struggling with his secretions. He is really really weak now. He tries so very hard to reach to his mouth with a light toy and gets such praise when he accomplishes this task. It breaks my heart to see him suffer so. I hate sma more today than yesterday. Today sma took another piece of Jacob from me.

Angela

Thursday, May 20, 2004 12:32 AM CDT

Hello Everyone! Man I just wanted to say how proud I am of my little angel. He has been through so much lately and he always has a smile on his face. He is so strong and such a fighter. Our little guys have to go through so much it just doesnt seem fair. But Jacob is always happy and always has a huge smile on his face. He is really quite content just laying around cuddling...watching the Wiggles, looking in the mirror...having his baths, playing with his balloons, holding his little farm animals...well they were Alyssas but she donated them to him!

I just wanted to say that today Jacob is 9 months!!!

YEAH JACOB
HAPPY 9 MONTH BIRTHDAY!!!
YOU MAKE MOMMIE SO PROUD!

I am requesting you take a moment to pray for a little boy with SMA type 1 also. His name is Cole and he could use a few prayers. He is one of Jacobs little buddies. Here is the link for his site Coles site

Along with Cole Madison and Skylar need prayers also they also have sma type 1.

On the link above Dillion needs some prayers he is really sick right now.

Thanks for supporting me and Jacob and my family. Even though we have been touched by this horrific disease we all have many people that are brought together to help us through many upsetting times.

I believe Jacob is here for a reason. He is my angel loaned to me for however long He sees fit. I believe He has bigger and better plans for my sweet angel and am blessed that He chose me to look after him. I was told that I should feel blessed as He only chooses special people to look after His angels. I do feel blessed. Jacob has taught me so much in spirit and soul. I know I am one of the lucky few who have been able to meet such a special boy.

Happy birthday angel.
I love you with all my heart and only you know what lies ahead.

Sending prrayers to all the sick little ones. I think about you often.

Angela

Prayers to all

Tuesday, May 18, 2004 11:30 AM CDT

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
UPDATE 1:30 AM May 19, 2004
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Hi I just wanted to let you all know that Jacob was doing so great tonight that I decided to go to Alyssas soccer game and MAN am I glad I did. She did so good tonight I am so very proud of my girl. They won again and she got not 2 but 3 goals tonight!!! They won 5-0!!! She is so great at sports. I have not seen any kid put forth so much effort into something they love!
Way to go baby!
I love you so much.

I took the cell just in case mom needed me but Jacob was an angel..
Papa Bruse sorry I missed you but I heard Jacob was happy to see you!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Sorry for not updating the page but Jacobs site is having some problems! It is with Caringbridge.

Jacob is doing great...Really great!

Nothing much to add. We had a great weekend and enjoyed the days with just me and the kids.

My mom has been coming almost everyday to help with Jacob. She has been really great!

Thanks to Becky Bunny and Charlene from Bears Who Care they sent us some happy mail and we loved it. Alyssa loved getting mail and this really cheered her up.

She won her baseball game last night and finally got a hit!~
My brother Dan took her to the game. She really loved that.
She has her second soccer game tonight and mom is taking her.

I wont be able to put up all the links I want to add yet until CB is back up and running...everytime I log on I lose everything I have added....this is really frustrating.
I have not been able to go to all our friends sites lately.

PLease know we think about you all and continue to pray. I will visit when I can and send little notes to you all soon!!!

Hugs and prayers and continued support is always welcome and much needed.

If I can I will try to update again soo.!

Angela

Friday, May 14, 2004 12:38 AM CDT

Hello everyone!

size="4Thanks for being so supportive when we have down days!
Thats the one thing most I love about caring bridge is that if we need support or just need to vent we can do it here and those have either been there or done that or felt that way. THANK YOU SO MUCH to all of you that left happy notes to me and my family.

Jacob is doing great!
He really is. Except for the heat he is really sweaty with the humidity. It is sopossed to rain tonight and break this heat wave we have been having!
Poor guy has to show everyone his boobies as he is only in a diaper now! He has to have his belly covered with a blankie as he wants to pull his little tubes out! OUch!!! Anyone with kidoes with a feeding tube...When it is hot what do you do to keep them covered and not be accessable to them? Really would like to know!

On a great note! Alyssa won her game last night!!! It was her first night of soccer and she RAN it to tell me they won 4-0 and she got 2 goals!!!! She was one of the stars last year and this year mom says she could be the BEST!!! She even didnt want to take her turn as a goalie and said "but if Im goalie I cant score"!!! So she had to sit out if she was not being goalie! Yes she is busy! She is in dance, soccer and baseball this year! Dance is over the end of May and base ball was only 6 weeks long--3 more to go! Then soccer goes all season until the end of August!

Again thanks for all the encouraging notes.
Jacob is doing really good now! I think his pnemonia is all gone and he does not need to be suctioned too much anymore. I still have to cough him 3 times a day to keep things moving in his lungs.

I try to get around to sign all our friends guestbooks but just cant find the time to visit everyday! I will be adding links soon to our page and will be adding the ones that I visit...if you would like yours added let me know and I will add you if you see yours up and would like it down let me know also!

Hugs and prayers to all the sick ones. I am always thinking of you!

Angela

Wednesday, May 12, 2004 10:24 PM CDT

Hello friends...

Sorry for not updating everyday like I said I would try to do.

I have been having a few bad days again. Not Jacob...me. Jacob has been so good yesterday and today. He was so good I thought it would be nice if I took him to Alyssas ballgame tonight. SO mom came up to drive us so I could hold him and off we went. It was REALLY hot again today, Jacob was only in a diaper most of the day. We lathered him in sunscreen and brought his machines and we left. We got there and there was a lot of people there.
No one came to see him. People just STARE AND STARE. I hate going anywhere now. Well one lady whose daughter is on Alyssas soccer team was sitting next to us and was watching us play with him in his stroller and came to look at him. She asked if he was the baby from the papers. Then started asking questions.

Are people afraid of him...afriad to 'catch' SMA? Are they scared of what to say? I dont get it. He is not contagious? He is a BEAUTIFUL HAPPY AWESOME baby!

I was looking at him today. Just watching him playing. He is so dependant on me for everything. He only laughs at what I do for him. He only smiles when I make him. He only sees what I show him. He should be crawling around discovering all the things babies discover... They say they have a really high IQ these children. They are really smart. I already know he is really smart but what if I dont stimulate him enough. He needs to experience things. He also needs to be protected from the bad germies....

He is not able to move his arms as much as he could before. He now has to sort of through his arm up off the couch or floor mattress to his face to see what I have put in his hand. WHY cant he have that one gene to make him stronger? Why does this disease have to take all his strength away? I HATE SMA soooo much. I hate to see him get weaker and weaker everyday. With every cold he gets he losses so much more and he will NEVER get that strength back...

I cant imagine the day if Jacob was to lose his smile. The one emotion he can always show me is happiness. I live and love and long to see those precious smiles everyday.

Jacob cant move his legs at all now....he wiggles his toes a bit and can manage to make his head move from midline to left or right a bit. Not much at all now. It is like watching a flower waste away (bad analogy I know) I dont know how to put my feelings into words other than it is breaking my heart to see my son so weak.

Sorry this was sort of a vent session....

Please continue to pray they find a cure this year or soon so so many of our kids and angels will have the oppourtunity to crawl...walk...run...play and enjoy life more fully than they are able to.

Dont worry Jacob never sees me upset. I made a promise to me and him that everyday would be happy. He loves me and life right now. I pray he will love himself and his disease when he is older. I cant look into the future I have to take it one day at a time.

Thanks for listening......

Angela

Monday, May 10, 2004 11:06 PM CDT

Hello everyone. Thanks for all the Birthday wishes and Mothers day blessings.

I added a player with pictures of Jacob and us on it. Sorry it goes so fast. I will try to fix it and change the photos when my scanner is fixed...

Saturday night Jacob had a pretty good night. I had to wake him up to suction and cough him to hopefully get some of the mucus moving around so the morning might not be so bad. It worked a bit I only had to 'work' for about 20 minutes Sunday morning!!!

Mothers day was really quiet for me. We woke up and had most of the day to ourselves. It actually was really lonely. I hate being by myself. I guess it was ok in that I got to spend quality time with my two angels. Mom and dad came to hav chinese food for supper. It was really good. They left and I had the rest of the night with the kids. Jacob went to bed early and slept all night again. He woke up playing and laughing and seems to be back to my little baby bear again.

Mom came today then his nurse came and the afternoon was spent doing laundry and cleaning. I love his Mon, Wed nurse. She is young and really into Jacob. I asked her to give him a saline treatment with his nebulizer and she sang him to sleep through it! Just awsome. Jacob really enjoys her time with him. Funny how he can pick out who he likes and who he doesnt. He is almost 9 months. This is amazing to me. If Jacob can make it through these next five months we may be 'in the clear'. From 8-14 months seem to be the most critical for sma 1 babies. He is almost there. 5 months seems like a mile away but these 8 months have flown so who knows...

Mom took Alyssa to her ballgame then Dan and Shannon came to visit.

Now Jacob is sleeping like a little angel. I cant wait to show all of you his new pics. I WISH my comp was fixed so I could. He is getting so big and grown up looking.

My baby bear is getting older and so mature looking. He is singing now and talking and babbling....

Today his nose was runny and his heart was high again. Even the nurse is not sure why his heart is so high? I had just said that Jacob has never had a runny nose before. Through any of his colds he never had a runny nose. Now one day after saying that he was blowing bubbles out of it!

Anyway I really want to thank all of you for visiting my baby bear and leaving me messages. I love to read them and check often!

Prayers for a great Tuesday!

My blessings to all the sick children here....

Ange

Saturday, May 8, 2004 4:10 PM CDT

I wanted to wish all you a happy mothers day!
I pray it will be an uneventful one!

Well Jacob had a quiet night last night. Nanny Cheryl and Christine brought over a HUGE HUGE butterfly balloon for Jacob to play with. IT IS HUGE. He was almost scared of it at first but seemed to love it after. He is really good with bopping them up and down.

Mom stayed the night last night with us. She was worried about him as his heart rate was really still high yesterday...180-190?

He slept all night again last night!! I am so very happy for this.

But...he woke up and seemed fine. I went outside for a minute...Alyssa and mom were with him. Alyssa came running out "Jacob is choking...hurry mom he needs you"
I went running in and suctioned him...coughed him with his cough assist machine...(I LOVE HIS COUGH ASSIST!!!) and suctioned...so on and so on. This took 30-45 minutes to get his 02 back up. He was in the 60s so I turned it off and just worked.....
He came back after a lot of plugs came out. He then had a neb treatment and seemed to be better.

He slept for a bit this afternoon.

Dale came to bring me flowers for my BD and Cheryl came with Norma to see him and bring a coffee.

Uncle Dan and Shannon just came to visit so I will get going.

Happy Mothers Day....

Please sign his guestbook even to say hi...so we know who stopped by.

Ange

Friday, May 7, 2004 4:00 AM CDT

Jacob had his neb treatment and seemed to break up his congestion a little. Then he had a long bath and really loved that.
We played most of the morning and I was thrilled to see him smiling and kissing still. After all he has been through he just still laughs and smiles. What a little trooper I have!
At 12 I had our nurse come again until 3. Jacob of course was fliting up a storm with her!
He vomited around 12:30? Not sure why it is not coming out of his stomache tube? It is sopossed to be coming out of it. The vomit was yellow and mucusy? I did CPT for a bit and coughed him and did a lot of suctioning. His 02 dropped down to the 60s so I turned it off so I could concentrate just on him.
He was fine after that.

I am looking forward to spending this mothers day with my two beautiful angels this year. This MOthers day is going to be so special to me.

Thanks for the continued support and guestbook entries!

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

----7:31 Am----
Just wanted to quickly let you all know that Jacob had a great night on Wednesday night!!!
He was great all day yesterday. My mom and dad came to visit and let me have a shower. Then they took Alyssa to the dentist. After they went home.
Last night his Nanny Cheryl and Aunt Kara and friend Christine came to visit and bring us supper. Also to bring a cake for my Birthday on Saturday! That was just great. Really nice of them. He loved the visit and was doing really good all day and night. No problems.
He slept all night on his pappy till this morning.
ALL NIGHT!!!!!
He sounds a bit gurgly today so I am hoping he can clear it and a bath will help to loosen all of the phlem in his chest. I have just been giving him his antibiotic and Neb treatments and he seems to be still doing great.
His heart is 170 this morning? Why I have no idea. I am going to give him a bath and will try to let you know how he is doing later.

I just wanted to say that I appreciate all the support and prayers I have been given. This truly was the most trying time for me and it showed in my last entry.
I hope all of you still respect the decisions I am making for my precious baby bear.
Thanks for all the guestbook entries I LOVE looking and seeing the entries. It makes my day.

Please pray for a couple of families in the sma community. We lost two more children to this horrible disease yesterday.

I am including our address at the bottom because I was asked by a few people for it to send Jacob some happy mail. SOme people wanted to send postcards and light weight toys. We would love to get happy mail. Thanks so very much and I will try to email all of you back when I get time to. Again thanks for the emails and entries!

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