baby book?

[2sickkids]

baby book?

Should I make a cf section? I want them to feel that it is a part of them but not every thing about them. Any suggestions?
I am making scrapbooks for my sons. I decided to do this and not get baby books. So I could make it personal. I have sectioned it out.
Ultrasound pics and at birth
Eating because they spend so much time doing it
First..
Birthdays
Being funny
Playing outside
Hospital stays
So much of the babybooks have things that don't apply to us. We have no family. I didn't have babyshowers. No one came to see them in the hostipal or gave them gifts when they were born. We don't do holidays in the way most do to us it is more about spending time together. We buy one gift and then put all the other money in their savings accounts. I want
them to have money when they grow up to help with their medical cost.

 

[anonymous]

RE: baby book?

I think that would be great as long as you kept it positive. It would be good for your children to see that their disease doesn't scare you to the point of leaving it out of their past/history.

 

[anonymous]

RE: baby book?

I think that is a wonderful idea that you have, CF isn't something they should be embarassed or ashamed about and if you create a scrapbook as such. It's important for children to be able to reflect back on things that were a part of their childhood, and if CF is a small or big factor-it should be included. Good for you to be doing this for your kids.


Julie

 

[anonymous]

RE: baby book?

i recently bought a journal that is just for cf.. its a health journal and it has a spot for EVERYTHING. i think i paid 17 dollars for it and it included the shipping.. i looked up some info and im just gonna paste it here..





Juggling Cystic Fibrosis



Erin Hopf is the mother of Paige, her daughter with CF. She found the best way to keep organized was to create a health journal. The journal was created to keep track of important medical information that can be helpful to caregivers as well as patients. My goal is to help parents, patients, and caregivers organize the records they need to keep to help the person they love.
A small example of what is found in the journal, Erin created is as follows.
* Personal information
* Doctor list/Pharmacy information
* Current tentative medications
* Hospital/doctor visits

Erin Hopf, and her daughter live in San Antonio Texas. She created The Little Acorn publishing company. You can obtain a copy of Juggling Cystic Fibrosis, by contacting Erin at thelittleacorn1@yahoo.com



i hope this helps you as much as its helped me..

Melissa mom to dylan 6 no cf and caleb 3wcf

 

[CFHockeyMom]

RE: baby book?

We don't have a special section in our baby book for CF but CF is definitely part of the baby book. We included how things were different before the diagnosis (at 11 weeks), the process of getting diagnosed, dates, how we felt about the diagnosis, etc. We have tons of pictures of our CFer in the hospital and family that visited. We kept it positive. It's a part of his life (especially the first couple of years) and ours so I can't imagine not including it.<img src="i/expressions/present.gif" border="0">

 

[SeasonsOfLove]

RE: baby book?

We took tons and tons of photos of Coll when she was hospitalized at birth - I think they filled 3 photo albums! At that time, the photos represented hope and now they represent what she went through to live! Plus they help me to remember little stories about what went on then.

Have a good day,

<img src="i/expressions/camera.gif" border="0">

 

[HollyCatheryn]

RE: baby book?

I definitely agree with scrapbooking ALL of life. We got a little notebook for my daughter (who does NOT have CF) and that is where I keep information on family health history as well as her personal history. For me, this book is not the scrapbook, but it is a way of keeping track of what things work and what doesn't, what she's had and what she hasn't. I hope to give it to her someday to help her get through the transition of taking responsibility for her own health care. Hopefully she won't have much. We recorded things like her birth story and breastfeeding history, as well as allergies and any tests we had to have done.My parents didn't really put any enphasis on scrapbooking CF, but it was just part of life. So, we have some pictures from various hospitalizations and there are pictures from when I was at home and had to do IVs. They also kept track of weights and illnesses. A couple of things that I've done to "scrapbook" that part of my life are:1) For many years I got a new pillowcase (a fun one) every time I went into the hospital. I took fabric markers and had any visitors, nurses, RTs or docs sign it. I have a stack of them and I've hoping to quilt them at some point. 2) I kept the mylar balloon people gave me. I deflated them and thumbtacked them to my bedroom wall in an ever-growing balloon bouquet. I kept a lot of the cards people gave me from hospital stays (I also kept special birthday cards or holiday cards)3) This one you may think is weird, but it was interesting to me and I'm rather forensic. I kept a lot of my IVs. You know, the little heparin lock. When they take it out, you can flush it with saline and then wash it in the sink. I just kept them in a little ziploc baggie. I make a point of keeping different or unusual ones. I have a regular hep-lock, a PIC line, a central line, and a couple of other ones that were unique and interesting. 4) I kept journals. They contain lots of facts and details, but also how I felt about things.

 

[anonymous]

RE: baby book?

I have always made it a point to include the good as well as the bad events in my son's scrapbook. We don't want to hide anything from him. CF is a major part of his life, but so is his family, friends, hobbies etc... we have a page for all of his experiences; so why not have one for CF. I agree that scrapbooks are better than the typical baby book, it's much more personal. I have forced myself to think positive, however difficult that may be. On his one year anniversary of diagnosis we decided to have a party celebrating his life and good health. We had over 30 friends and family come and support us. We included that in the scrapbook and look back at it now and it always makes us smile.
Hollycathreyn, I used to save my pill bottles, hospital bracelets, get well cards, and even the huge, bloody "steri-strips" from my abdominal surgery!

 

[2sickkids]

RE: baby book?

Thanx for the input everyone. They both have keepsake boxes as well. I put their room stickers and hospital bands from all hospital stays. I put the baby's test results that show his vision and hearing problems as well as the sweat test and blood work that showed they had cf. Does anyone else keep their kids medical reacords? I get them sent to my home from the hospital once a year and store them in a file cabinet.

 

[anonymous]

RE: baby book?

I don't know about the parents of kids, but every year I get a copy of my husband's medical record and file them. This proved very beneficial when we had to got to a hearing so he could recieve SSDI. It is also a hassle sometimes to get copies when we need them so that is just more convenient. I think you've got the right idea.



Julie (wife to Mark 24 w/CF)

 

[CFHockeyMom]

RE: baby book?

Getting a copy of your medical records is a great idea. It never even dawned on me to do that. We're usually very organized when it comes to our CFers info, getting a copy of his medical record would make things a lot easier. How should I go about getting a copy? Is it as easy as asking our CF Dr.?

 

[2sickkids]

RE: baby book?

We are at a cf center I just go to medical records and fill out the forms. It can be done free once a year and they pay the postage. Ask for a release form and put you address and name in the send spot.

 

[anonymous]

RE: baby book?

I never put any CF info in their baby books, but as the mom of 3 (2 w/cf), as they get older (9, 11 & 14), it is harder to remember all of the CF related issues that they experience.

So, I have a looseleaf book and keep all of the CF info in there. I take it with me to each DR appt and list their weights, surgeries, IVs, PFTS, bloodwork, etc. Because, I Cannot remember it all and have been known to confuse which kid had which!!!

 

[anonymous]

RE: baby book?

Hi! I also find that baby books aren't really geired to the all american family, seeing as most families are extended, seperated or otherwise. So, I started just plain old diaries for my two little ones, and every week or two, I just add things like..."oh you love spaguetti, and hate strawberries, and I love the way you do that funny face".... and so on. They also have their own medical diary, one for my daughter with CF, and my sons, just every other month shot or problem or concern. As I fill the books, I put them in their baby box (keep sake) and start a fresh one. They will always have fun reading back, what they were like and I won't have to try and remember.."mom when did I lose my first tooth" and so on. Just an idea for you. take care