Gracielicious

We took Gracie to the dentist yesterday and she did so good!  Of course it helped that she was in the full out Scooby Doo room and they had a flat screen on the ceiling playing Sponge Bob!  It was mainly just a consult and they looked at her teeth and checked for cavities.  The dentist said her teeth look so clean and healthy and no sign of cavities!  It helps of course that she never eats candy or drinks juice but still we have been told that kids with special needs are susceptible to teeth problems, so it was great news!  Just one less thing to worry about and that's a big deal for us! :-)They were going to set her up for an outpatient appointment at the hospital since they have to completely sedate children like Gracie so they can work in their mouth.  It's not a simple thing and seems like so much just for a teeth cleaning but for kids like Gracie who have such severe mouth aversions that's the only way to get their dental work done.  So we were so excited when the dentist said that she did so good she thought that they would not need to do that for her with just a cleaning, but in the future if they have to extract teeth or if she needed fillings they would.  We were going to do the sealants that protect the teeth from cavities too like we did with Ari but she said since no sugar, etc. goes into her mouth she shouldn't need them!We are just so proud of her at how well she did!  It's a pretty big deal when you have a special needs child and you go to the doctor and they don't have anything negative to say.  We usually leave the doctors office and I am totally bummed out and depressed because they have told us yet one more thing they are concerned about and that they will need to do this or that and have to run these tests, etc.  So it was a cool day! :-)

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Hey all.  I want to thank all of you for the incredible response.  I am building the book right now and we have about 40 pages so far.  Hopefully I can post a pdf soon with sample pages so that you can see what it will look like.  Once we have finished entering all of the recipes and are satisfied with the layout and so forth, I am going to use Lulu as a self publisher.

We are planning to use a spiral binding so that it will lay flat while cooking.  The total page count should be somewhere between 80 and 100 pages and will include the following sections:  Main Courses, Sides/Appetizers and Desserts.  I also may include a section on Grilling, or we may save that for another book since I have a large number of recipes and information on grilling that we use every chance we get.

Once we are satisfied with the book, we will order them from Lulu and will have Gracie "sign" each one with a handprint.

Again, thank you so very much for the recipes you have sent.  May God bless you all!

J

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Apparently the About Gracie page was only displaying half of the story that is supposed to be there...so it is now fixed if you want to go back and read the rest! :-)

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Just an update on Natalie's "cold".  Took her to the urgent care last nite and she has bronchitis and sinus infection :-(  She is on Azithromycin now and we got her one of those really cool new humidifiers, it's a big Spongebob and the moisture comes out of his sponge holes on the top of his head!  He is so cute! :-)  Helps making getting well a little more fun I guess!  She is still so congested but I can tell she is already starting to feel better!

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Well, it's Monday and it feels like it!  Ari and Gracie are both sick with a bug that is we are told "just going around".  Been up all weekend giving Motrin to keep fevers down.  Other than that nothing much new....still no word on when her wheelchair will be ready, I figure another 2-3 weeks. 

The cookbook is coming along good...we are going to try to post some sample pages on the site here for everyone to get an idea of what it will look like.  We have only received 10 recipes so far so we are having to come up with more on our end than we anticipated...but it's coming along!

d

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Well, we have had quite an emotional rollercoaster of a week.  Monday I came across an article about Duke University Hospital transplanting stem cells from newborn umbilical cords into children with cerebral palsy via IV.  The results of these transplants were fantastic!  By no means was it a cure but it has made these kids lives so much better!  Some that were vision impaired can now see and some that could not sit without support can now sit and some are now talking in full sentences!  We were so excited...I was shaking and we stayed up until 2am researching online all the information we could find. The only downfall was that they will only transplant the child's own stem cells not a match/donor.  Natalie was born 6yrs ago and we just weren't aware of the whole storing umbilical cord thing that is so popular now.  I was so bummed, but then Jerry remembered that when we had Natalie they asked if we would donate the cord to research...they were going to throw it away if not.  We did donate it...and I made a call to Gracie's amazing NICU nurse at Duke (Brigit...we love you)....and she made some phone calls and gave us the information we needed to find out if they still had it stored.  Unfortunatly, they don't (one of the many letdowns we have faced and will face) it's like a rollercoaster of emotions.  So after I got over the letdown of that...I pressed on and did some more research.  Come to find out, you don't have to use your own stem cells for this procedure, only if done in the United States because transplant of donor cells is not yet approved in the US.  We found lots of information on a particular Neurologist in California that has an office just over the border in Mexico that will perform the procedure.  I know...it's sounds a bit scary that you have to go to Mexico to do this but I have been emailing parents who have done this with this doctor and have had good results.  It is all very safe and his office has quite a organized procedure set up where they come and pick you up at your hotel in San Diego and take you over the border to the office there.  Everything is tested and done safe.  This is not a cure...but it is hope that in the future as they learn more about the stem cells and what they can do, it will be a cure someday...but we do know for now it could mean a better life for Gracie.  The treatment is (of course) not paid for by insurance and will cost around $10,000...so will be saving up for it and we are also hoping to get a fundraiser started soon or a raffle of some sort going to raise money.  I have posted some links with more information and testimonials on the site....check them out, it's pretty interesting!

d

Labels: Cord Blood, Stem Cell Therapy

Today I was talking to a mom at the playland at McDonald's.  Her son and Logan were playing together.  She and I started a conversation that led into talking about our other children and when I told her about Gracie she said, wow I don't know how you do it!  God bless you she said to me....she said she just doesn't know how I do it....she says to me that at times she doesn't think she can even handle the role of being a mom somedays much less being a mom to a child with special needs.  What was I supposed to say to that?  Now, she was a very nice lady so I truely believe in her heart she was attempting to compliment me, but as she was saying to me she just doesn't know how I do it and that she just wouldn't be able to handle it and so on....the thoughts are running through my head and I am thinking, I don't know how I do it either...I just do and so would she....she is a mother and you just do it...I didn't ask for Grace to be disabled....never in a million years did I ever think I could handle or "do" the type of role I have been given. You just do it right?  I know she meant well but it just came across as though I had a choice of raising a healthy child or a special needs child.  And made me think about what exactly she was saying....she says she just couldn't handle it?  She can't imagine it no, but handle it, yes.

d

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