Friday, October 31, 2008

It gets me every single time

Just like a sucker punch to the gut. Why do I always have a horrible September and October? Then when I get through the crap, I am reminded in the back of my mind...Duh, you lost your baby boy in September and your father in October. What did I say lost, that almost makes it sound like they can be found. And that is a joke because I will never see either one of them.

I still miss my father with a pain as deep as the soul can feel. I wish everyday that he was here to play with his grandchildren because I know he would have made a hell of a grandpa. So, to those of you whose children still have their grandpa's, call him today and thank him for being the wonderful grandpa that your kids could ever have OK?

And for those of you who have lost a baby, you know the drill. They say it gets easier, but you know what? It doesn't. Not for one bit. It's like a wound that is split wide open and gradually grows together and then slowly grows a scab. The scab routinely gets pulled off, the pain comes back but it isn't quite as bad as it was.

I miss you Dad.

I miss you my baby boy Jared.

I love you both.

You will never ever be forgotten.

Wendy

Tuesday, October 28, 2008

Gillian's Blog

Gillian has her very own blog over on wordpress. If you aren't squeamish, go ahead and read!

If you google gils uc story you should be able to find it, or e-mail me and I will fwd you the link. I am too tired to try and fight with the computer to make the link work right!

I have been sleeping most of the day and night as I am in a bad flare right now. Everything has caught up with me. I promise I will write more as I am able!
Wendy

Wednesday, October 22, 2008

We are home!

Gillian came home today! Yippee! Now I am on a quest to try and make her some colostomy bag covers. I think I can do them, but I am still a newbie at the sewing machine. I can't wait to get back to my machine and finish Katie's quilt, finish the Easter Dress that I started for her a while back, finish a Halloween quilt that I started and then last but not least, finish the quilt I started cutting out for Gillian. Then I can get to work on the projects that I haven't started yet!

I also want to make Gillian some flannel pants so that she has some comfortable pants to wear with her ostomy around the house. I stink at making pants. I have tried, believe me, but have never gotten it down. I am guessing that I need to have someone show me for the first time and then I will have it.

Wendy

Sunday, October 19, 2008

Success!

I am so sorry to keep you all waiting but sleep had to come first. I am heading back off to bed, but wanted to let everyone know that she had a semi colectomy on Friday and the colon was very sick. Gillian is the proud new owner of a stoma and a colostomy bag. She loves the stoma (for some reason) and is very proud of the noises that it makes along with the waste that it makes. And for the first time in 5 years she is Colitis pain free. She has some surgical pain, but has a morphine pump for that and is using it less and less each day. I actually came home tonight to sleep with my family and left Gillian alone at the hospital since she doesn't have to get up and go to the bathroom all night and she slept good last night. She'll call me if she needs me.

More later and maybe some pictures. She is documenting everything and we even gave the surgeon a camera to take into the operating room to take a pic of the part of the colon her took out. She is taking pics of her stoma and everything that involves it. That's my girl I tell ya. I have lots to tell you about everything, but I can't really put a coherent thought together right now, so more later OK?
Wendy (mom to STOMA girl!)

Tuesday, October 14, 2008

Sugery is set

For this Friday at 1PM EST. Any prayers and well wishes are most appreciated. Gillian was visited by a girl who has gone through what she is about to go through and that helped a lot. She has decided to name her stoma Pablo and has been playing with her Ostomy supplies, figuring them out, etc. She shows everyone who comes in and I am planning to try and make some covers this weekend. The girl that came up to visit her brought 2 covers and a pattern, so I am going to try and make some funky covers. She likes tye die and rainbow so I am going to search for fabric like that. So, she will go through the 1st of 3 surgeries on Friday and have most of her colon removed. When that heals, then she will go in for the 2nd surgery where the small intestine will be made into a pouch and be readied for the reversal. Any one who is interested in learning more about this can go to J Pouch and find information there. Cheryl and I continue to support her by spending the night with her, switching off and on every other night and I stay with her during the day. Cheryl is trying to save her time for her surgeries.

Of course I heard back from my lawyer today which usually means that we are getting ready to go back to court. What a time huh? Well, we will get through it. I keep praying everyday for God to give me strength and he always comes through.

And Katie is hanging in there. We are all troopers. We really are, even when we don't feel like it. Off to put Katie to bed. Night everyone!
Wendy

Sugery is set

For this Friday at 1PM EST. Any prayers and well wishes are most appreciated. Gillian was visited by a girl who has gone through what she is about to go through and that helped a lot. She has decided to name her stoma Pablo and has been playing with her Ostomy supplies, figuring them out, etc. She shows everyone who comes in and I am planning to try and make some covers this weekend. The girl that came up to visit her brought 2 covers and a pattern, so I am going to try and make some funky covers. She likes tye die and rainbow so I am going to search for fabric like that. So, she will go through the 1st of 3 surgeries on Friday and have most of her colon removed. When that heals, then she will go in for the 2nd surgery where the small intestine will be made into a pouch and be readied for the reversal. Any one who is interested in learning more about this can go to J Pouch and find information there. Cheryl and I continue to support her by spending the night with her, switching off and on every other night and I stay with her during the day. Cheryl is trying to save her time for her surgeries.

Of course I heard back from my lawyer today which usually means that we are getting ready to go back to court. What a time huh? Well, we will get through it. I keep praying everyday for God to give me strength and he always comes through.

And Katie is hanging in there. We are all troopers. We really are, even when we don't feel like it. Off to put Katie to bed. Night everyone!
Wendy

Friday, October 10, 2008

12 days into this....

And I think we are still sane. Do we have a choice? We are waiting for Gillian's surgeon to come back from out of town before she goes in for her first surgery out of three. She will come out of that surgery with a ileostomy. The surgery that she is having (for you Google fans) is called a Subtotal Colectomy w/Ileostomy. That is the first one. The there will be 2 more before we are finished.

I personally am finished. I can whine,grouse, bitch, etc, but it's not going to change anything. Gillian refuses to do school work up here and I worry about her ability to graduate. She thinks that she will just go back to school and all will be well. Meanwhile she is doing color by numbers and texting. At least she won't forget how a pencil moves or how to spell :)

Katie was a spit fire last night. Her teacher told her she was going to meet with a counselor today and she was all up in arms about it. The poor child just wants her family home (and her family wants nothing more than that) and to top it all off, Grandma is leaving today to go to DC for the long weekend.

Anyway, we are handeling things. Looks like another blood transfusion is on it's way either today or tomorrow. I am guessing it will be here about 15 minutes after I fall asleep because that seems to be when things happen around here. Just you try to get some sleep, just you try. It's like the taunt you, "Now's a good time to get some sleep" what they don't tell you is that 15 minutes after you fall asleep they will come in with some life making decision to make and you are so tired and your ability to make a decision to go pee is out the window, let alone making a decision to have your daughter transfused.

Well, that is my attempt at humor for the day. I know her teacher must be peeing in her pants laughing, since everyday the kid comes to school in a kooky outfit (you wouldn't believe what she will talk her mother into wearing) and her hair down. Not that I am tooting my own horn..well, I kind of am, but when I put her on the bus, she is matching and her hair is done. Cheryl. you need to learn how to put the child's hair up...I am begging you! LOL!

Over and out from a sleep deprived Mommy!
Wendy

Wednesday, October 08, 2008

Things are a changin'

OK, so scratch the last post. Things have changed and we are now at option 2, which is them building Gillian up enough to have surgery. They will take out part of her colon, give her and ostomy. When that heals, then they will take the rest of her colon out, make a small pouch from the small intestine, create an ostomy out of that and when that heals and the SI learns how to do the job of the colon, she will have reconnection surgery. 3 surgeries in about 6 months or so. The name of the surgery she is going to have (for those of you who like to look things up on the net) is SubTotal Coletomy with Ileostomy. I am purposely staying off the net because there is a lot of scary stuff out there.

Gillian is in massive pain. You know when a 16 year old wants an ostomy, that it must be bad. She had a blood transfusion the night before last and that helped. She is getting Morphine now and that is helping too.

Katie is a mess. She is crying at school, not wanting to leave us. This morning I put her on the bus and she told me while we were waiting for the bus that she is having a hard time getting her work done because she is worried. Break my heart. Oh, wait, it's already broken. I miss her so much when I spend the night at the hospital and all Katie wants is for her family to be home. We all want that. I just told her that the best thing that she can do is to do her work and try to have fun at school. We tell her everyday what to expect, "Where is Mommy going to be, where is Mama going to be, who is getting you off the bus, etc." and we make sure she gets to Ballet and Soccer so that she has some real continuity.

Our church family has been wonderful. Dropping off food of and on so there is always something to eat in the fridge. Coming up to visit Gillian and say hi to us.

I do believe that God has us in His hands. That is the belief getting me through these days.
Wendy

Cheryl is still working as much as she can, but can take FMLA. We are trying to save that time for when Gillian has the actual surgery since there will be 3 of them.

Friday, October 03, 2008

Shit Happens

This may possibly be the most difficult post I will ever write. I am writing to you from Crouse Hospital where my 16 year old daughter is lying in a bed next to me hooked up to meds through a PIC line. She can no longer eat or drink for 2 months and will receive all of her nutrition through TPN (Total Parenteal Nutrition) She is also being started on Remicade tonight to get her colon as healthy as possible to remove. Yes, I said remove. She is going to have surgery in 2 months to take out her colon and she will have a temporary colostomy/iliostomy. They will take her small intestine and make a pouch and once that learns how to act like a colon, they will go in and put that in and she should be able to live a normal life.

Katie is sick. When the surgeon was here, school called to say she had a fever. She was seen at the MD today and it's just a cold. SO, now we have to worry about cross contamination. Plus the poor child's world is un an uproar with only one of us being there at night. Cheryl and I are taking turns being with Gillian at the hospital.

I can't write anymore. I am so tired.
Wendy