Gracielicious

Hello to all!  Hope everyone had a great summer!  We have only been back from Gracie's intense therapy in Kansas for a week now.  We are still trying to get settled in.  As soon as we got home it was off to school and paperwork catch up and unpacking 4 weeks of "stuff" accumulated during our trip.  Not to mention we were with Nana and Papa for 4 weeks so take 3 grandkids and put them with their grandparents for 4 weeks and just imagine the toys we accumulated!

Well, everything went well and we have tons of pics and things to share and will post all soon...just wanted to let ya'll know all is well and we are home now!  We are having a beautiful fall season...this is our third fall here in MN and I hope this winter when I am cursing the snow and freezing cold I can close my eyes and remember the fall season here!  It is that beautiful!

So check back soon...I will be posting pics and stuff soon!  And the cookbook is still a go...just had to take a big break from it with the therapy stuff this summer...we will be back to working on it soon!

dani :-)

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Gracie started horse riding therapy a couple of weeks ago.  Hippotherapy is used to help kids with all sorts of disabilities but for Gracie it will help her balance and strengthen her torso!  She really liked it but unfortunately we will have to take a break from it for 5 weeks as we are leaving for Kansas Tuesday to start her Hyperbaric Therapy and her Therasuit/Intense Physical Therapy.  She also started a new feeding/speech/occupational therapy center a few weeks ago and we are excited with the new ideas they have and she seems to really like her therapists there!  You never know....we have had therapists where she just doesn't click with them and just cries the whole time and you have to move on to finding a new therapist.  But we really like this new place and she has been going twice a week for 2hrs each time and has does really well!  Of course we are having to take a break from this therapy as well until we return from Kansas...but when we come home we will be working with her speech therapist (Julie) to fit her for a new talking device called a DynaVox.  She will be able to use this little computer as her voice...it is installed with a talking tool software and she can push the buttons on the touch screen and it will talk for her.  It is small and portable so we can take it everywhere with her!  We are very excited about this for her because she is sooooo smart and has so much to say and they have tested her with one at therapy and she can use it like you wouldn't believe!  The DynaVox is a talking tool, computer and dvd player in one, so she will be able to play her computer games on it and watch movies, etc!  

Well, check back soon....I hope to be posting more often with this hbot and intense therapy for the next few weeks...hope I will have lots of goods news to post!  Here are links to pics from Gracie's horse therapy and from a recent little trip to the MN Children's Museum.

dani :-)

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Here is a video clip from a friend of mine....they (Debbie, Nestor and Amelia) were featured in a news segment about hyperbaric oxygen therapy and intensive (suit) physical therapy.  Amelia has been receiving these two therapies the past few weeks.  While they were there they did a story about the therapy center and the success of these therapies for kids like Gracie and Amelia with cerebral palsy.  This is the therapy I mentioned that we will be taking Gracie for in August!  We have done the HBOT before and Gracie showed great improvements from it...so we are excited to try these two therapies combined!  Amelia is doing so well...it's just awesome...check it out below!

Amazing Amelia

dani :-)

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We are no longer using this blog for updates on Gracie...please visit her new site at...

Really not much going on lately to report. Gracie has been sick for the past couple of months. She had pneumonia twice and an ear infection. She handled the pneumonia pretty good, compared to when she was younger. It really showed us how far she's come because a couple of years ago she had pneumonia and we were in the hospital for two weeks. This time it was just urgent care for a couple of hours and home with an antibiotic. As for having it twice though in a two month time frame, they think it probably just never fully went away the first time. We took her in for a follow-up a few days ago and lungs are clear!

She was fitted yesterday for an adaptive bicycle...she loved it...can't wait to get hers! It has to be ordered so it will be a couple of months probably but maybe sooner we hope! Just please....can anyone explain why we went to Target a few weekends ago and bought Logan a "big boy" bike for $75 and because Gracie has to have a "special" bike it's $4000? I mean it's not your typical bike or anything I know...but come on! We will post pics when she gets it!

School is out in a couple of weeks and the girls are excited! We are planning to go to Nana and Papa's in August for HBOT and intensive suit physical therapy. There is a HBOT center in Kansas City only about 20 mins or so from their house. Which is nice because we can just stay with them and not have to worry about a hotel.

Jerry is busy on the cookbook...he only gets a chance to work on it here and there between being a dad, husband and work he doesn't get much time to work on it....but it's coming along! Here is an example of a page from the book....

So...that's about all for now...hope all is doing well!

D

Labels: Adaptive Technology, Cookbook

Our church had a family fun festival a few days ago and the kids had a blast!  They rode horses, played games and they had those blow up jumping obstacle courses!  Gracie loved the horses so we know she will love the hippotherapy (horse riding therapy) when she gets to start!  You will see Gracie in her new "ride" in these festival pics.  I just realized that I had not posted any pics yet of her new wheelchair.  She really likes it...she had so outgrown the stroller so she was ready for it...me not so much.  It was kind of a bittersweet moment for me....happy for her to have it because I know she is more comfortable in it and likes it but hard for me and sad because she needs it and has to have it :-(   She looks cute in it though, all pink and shiny!  :-)  Here are some pics from the festival....

Also, here are just some misc pics from the past few weeks.

 

d :-)

 

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Well, this may be an "I need to vent" post...so here we go!  In the past few weeks I have come across the comment twice as to being or feeling blessed.  First let me run past you the opposite of blessed...cursed. So the first situation someone recently forwarded and article to me about an amazing young man with special needs and his dad...although the article was very interesting and I appreciated her thinking of me and my family...she had the nerve to mention to me how the article made her feel "blessed".  Then while my mom was talking to a couple of people the other day a young lady with disabilities passed by them in her wheelchair and one of the ladies looked at her and said "now that's when you count your blessings and know you are blessed".  Now being a mother of a child with special needs what you are telling me and everyone out there with an illness or a disability is that they are not blessed. Maybe this sounds like I am overreacting or something but if you really think about what the word "blessed" means I think I am not overreacting.  Yes, I want Gracie to be healthy and walk and run and eat and talk, etc...but is she not blessed by God because she can't or are we her family and friends not blessed because she cannot do these things?  Gracie and her friends and family and everyone else like her are blessed as well.  Having a disability or a disabled child is just a difficult hurdle just like other things in life such as financial struggles or a loved on dying, etc.  Your life can change in the blink of an eye and just because challenges confront you in whatever way they may present themselves doesn't determine whether you are blessed or cursed.  

We are human and say things and don't "think" about the words we choose when we are speaking...I can only imagine the things I have probably said in the past that has hurt someone and I didn't realize it.  Like I said this was a vent post and just something that has been eating at my heart and just needed to write about it.

 

 

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We are now offering bracelets as a part of our fundraiser to help pay for the numerous adaptive equipment and therapies Gracie needs that insurance does not cover. The bracelets are purple and say "gracie's friends". They are available for $5.00 plus $1.00 shipping. If you would like to support Gracie and purchase a bracelet(s) please click on the PayPal button to the right of this post to place your order and we will mail it to you ASAP! Please pass this on to anyone who may be interested in a bracelet. Thank you to everyone for your support…Gracie sends hugs! J

Thank you to Grandma Jackson who had these bracelets made for us…we love you! J

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The Beautiful…



 

The Good…

Well, we had great news Wednesday when Gracie's teacher stopped us when we were dropping her off at school. He said they have been discussing with the other teachers and therapists to move her up next year into a more advanced class! They said she continues to amaze them everyday with how quickly she learns and how smart she is. They already moved her into a more advanced class at the beginning of this year and she is ready to move up again. This will still be a special needs class although most of the kids are able to walk but some of them cannot talk as well and have developmental disabilities. Her teacher (Mr. Mike) says that she is well on her way to learning to read with how quickly she recognizes words! When we get her "talking tool device" we will be able to understand even more of what she understands! We are so excited for her and so proud! She also took 2 steps without holding on to anything a couple of days ago…but they were very small and unbalanced and she fell. Don't get too excited though because she is a long way from walking and we are still not sure she will ever walk without some sort of walker assistance but this was so cool to watch and she was so excited and laughing so hard she couldn't keep her balance. Her torso is so weak and her balance is so bad it makes it so hard for her. We are hoping to get her into hippotherapy (horse riding therapy)…this is supposed to really help to strengthen her torso. Unfortunately, there is a 2 year waiting list as there are not many horse therapy places around, so we just hope they have some cancellations and it won't take 2 yrs. Her PT also got her to walk about 10 steps in her walker with only the sling seat in it and no other constraints! Also, Gracie has never said a single word…she only makes sounds like an infant would goo-goo, gah-gah, etc. Last night Jerry was asking her if she wanted to go nite-nite and she shook her head no and said no!!!! It wasn't a clear no, but it was more like na…but it was a definite no for her along with the head nod no! We were so excited we kept asking her questions we knew she would say no to and she continued to say it again a few times more and then got bored of it…we wanted to hear it all night! How many parents want their kids to tell them no? Not many but she can tell us no all she wants! J

 

The Bad…

Gracie had a major seizure Friday morning. She woke up around 1:30am ready to go for the day (of course she was the only one ready to wake up)! She ate and watched cartoons and then was ready to go back to sleep around 5:30am. She was asleep for about 3 minutes and started seizing. It was a big one like she used to have before she started on the Keppra medicine. Her entire left side was tight and jerking so hard...it was so heart breaking . L We had to give her the Diastat medicine to stop it, which we haven't had to do for 3 years. Gracie didn't even start having seizures until she was 2yrs old and they then put her on Keppra and it kept her seizure free again for 2 ½ yrs and when she started having them again they were very small and stopped on their own after just a couple of minutes. Unfortunately, this time was different so now her neurologist wants to check her Keppra level to see if it's at the level it should be to "work". They will just have to draw her blood to check it so not too invasive. The strange thing about her seizures is that we have noticed a pattern that every time she has one she starts doing something new. Almost without fail, when she starts doing something new, shortly after she will have a seizure. Days before this seizure she started really trying to walk (like I mentioned above in the good) and then a day after the seizure she became much more vocal and started saying no! I know seizures are not good and we absolutely hate it when she has them but it always seems like something good happens around the time she has them…really weird!

D

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Well, this morning Gracie woke up with a little rash on her nose, it was such a small area and only on her nose (at the time) that we didn't think much of it.  We went through our normal weekday morning getting ready for school routine and she seemed fine, laughing at Ari and Logan and watching cartoons.  When we got to school I noticed her cheeks looked a little red/rashy too so I had the nurse take a look at her and she wasn't sure either and just thought maybe it was something that she was allergic to that touched her face or something because she had no fever and was acting fine.  I told them to call me if it got worse or if she had a fever, etc.  Well, she made it through the day and when I went to pick her up I noticed her face was still rashy (it seemed worse than earlier that morning).  She did seem okay still and was happy and smiling when she saw me and Logan...though she seemed a little "slow" in responding to me…kind of delayed responses.  By the time we got home and I brought her in the house it had spread to her neck and behind her ears and it had heat when you touched it.  I called for Jerry to come up from the office and he noticed too that it had gotten worse so we checked her temp and she had 100.7.   Of course her regular doc office was closed by then so we took her to urgent care.  They tested her for strep and that was negative.  But the xrays showed she has double "walking" pneumonia. Walking they call it because she really didn't have any typical signs of pneumonia, no congestion or high fever, lethargy, etc. Like she was walking (don't I wish walking) around with it but not really sick…if that makes sense! He put her on amoxicillin because it's been less than 30 days since she was on azithromycin for her bronchitis and sinus infection. Poor Gracie L She is such a trooper…she still seems fine though, nothing like the pneumonia she's had in the past. I am hoping that's because maybe we caught this one early!

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I just have to share this story on Yahoo I came across of this amazing 10yr old girl Jemma with cerebral palsy.  She is non-verbal but "speaks" more than any of us ever will!  It's what we say about Gracie all the time…there is so much inside that precious head but she just can't say it. L We are in the process of working with her speech therapists to find her the right talking tool similar to the one the girl has in the story. Gracie does pretty well with her sign but as she is getting bigger and smarter J so she has more to say than her fine motor skills will allow her to sign. They have been doing some testing with Gracie at school and she is able to recognize 8 out of 10 sight words. Also, yesterday they showed her the names of the kids in her class and asked her "which name is Sarah, Devin, etc." and she got them all right! This is a big sign that she will probably be able to read someday! How awesome for her to be able to enjoy a great book! J


Check out the story…here's the link…and a correction for the news guy telling the story, cerebral palsy is not a disease, it's a condition resulting from an injury to the brain....just had to say that!


Watch Jemma's Story

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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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Well Natalie is outgrowing everything...though she has come sooooo far...we still had hoped(of course) that she would not need all of this special equipment. We are in the middle of demo(ing) equipment piece after equipment piece....we have recently placed an order for a wheel chair :( we so hoped we wouldn't have to go there but she has to have it...it will take about 8wks or so to get it though.

Luckily they let you demo these things before the big purchase. We had to change and add about 15+ things for this chair to be appropriate for her. We are also trying out a gait trainer(type of a walker), a special bath chair and are looking for a feeding chair as well. There is more needed but we can only demo so much at one time...it is so overwhelming.

We are also starting to discuss if we want to convert the van into one with a lift where we can just push her chair into place and no longer have to transfer her to a carseat. She is getting so big our backs are not doing well and I am sure the bigger she gets it is uncomfortable for her as well to be moved around.

So anyway lots going on with all this so will keep ya'll posted!

d

Labels: Assistive Equipment, Growing

I have a really hard time dealing with the fact that we are a different family than the average family. I miss that we can't do the typical normal family things together. People take this for granted....I have seen it and it makes me so sad.   

It is so hard to even just all go to the store together or just dinner. We can't just go family camping or lets just up and take the kids to the zoo or whatever. Everything we do (pretty much) is separated. Jerry will run here or there and then I will run out and do what I have to do, etc.

You can't just take Gracie anywhere...you have to be so prepared with all the seizure meds stuff and feeding tubes and you never know when she is just not going to cooperate and the day just has to come to screeching halt! And yes I know not all kids cooperate, but when a child like Gracie doesn't it's so different.  We can't just be out and about and decide oh let's grab dinner out or something...we have to make sure we have the portable t.v. charged or she won't eat and will fuss and scream the whole time. I am sad for Ari and Logan that they can't just experience these little family things.

Not to be selfish...but it is just really depressing sometimes.

d

Labels: Special Needs Difficulties

Hello! Tonite was our parent-teacher conference with Gracie's teacher Mr. Mike and all her therapists were there too! It went very well....they talked about her future with reading...which is so exciting to think she may be able to read someday!

I know she loves books and for us to read them to her and look at the pics and such but how cool for her to be able to read to herself and get that enjoyment from a book! Mr. Mike said that they are working on "sight words" right now...such as the, and, a, is, etc. And out of the 8 she recognizes 7 of the words! So they thought this to be a great sign that she will be able to read!!!!!

Her speech therapist is now working with her on a new communicative device...the Dynavox device Gracie was using broke...ooops! Apparently they were working with her the other day and she didn't want to do what they wanted her to so she threw it off the table and...yep, it broke...not good considering these are $8,000 (yes thousand not hundred dollar) communication devices!

There is no such thing as inexpensive when it comes to special needs equipment. I guess she chose a different way to communicate with them this time...I think they got the hint! Her physical therapist says she is doing well and gave us some new exercises to work on at home for strenghtening her torso and arms...she hates these but they work. Overall it was a good conference....her therapists and teachers are proud of her progress! And so are we! :-)

d

Labels: Adaptive Technology, Reading

Natalie Grace (we call her Gracie) was born December 17, 2001...barely breathing, barely moving and no cry. About 15 mins or so after she was born she stopped breathing and had to be resuscitated. No answers...we believe I had preeclampsia that was missed by the doctors..all signs point to that so that is all can think other than at some point inutero or delivery she clamped her cord or it was wrapped around her neck at some point causing her blood flow/oxygen to be cut off. It is very difficult for me to not have some sort of answer/closure as to what happened. She is 6 yrs old now and I still relive her birth over in my head every night as I try to sleep. I know that seems like a lot of nites...but I truely cannot remember a nite I haven't relived it. Well...back on track here...so it was all down hill from there. She spent almost 2 months in the NICU at Duke where they would preform every test known to man to try and figure out what was wrong. The MRI showed that at some point either while in utero or during birth she suffered lack of oxygen. She was then diagnosed with HIE (Hypoxic Ischemic Encephalopathy). She had no suck, swallow or gag reflexes and suffered terribly with reflux. After weeks of on and off again intubation's and infections such as pneumonia and RSV she became strong enough to breath on her own and slowly worked her way out of the NICU. She was placed with a G-tube so we could feed her at home and had to have a nissen fundoplication (stomach wrap) so she would not reflux. We were sent home with an apnea monitor, a suction machine and caffeine meds to keep her alert so she would breath enough to keep her sats up at a safe level. It was so nice to be home....we lived at the hospital....we would take turns going home to shower and that was it...we slept and ate there everyday. It was so great to have her home....you really grow to hate hospitals...I still get nauseous from the smell of the hand soap, remembering scrubbing up to our elbows every time we just wanted to touch her. We learned a little everyday how to take care of her special needs...it was so scary...so delicate and fragile. She slowly began to gain some of her sucking and swallowing reflexes....when she was around 6 months old we didn't have to suction her anymore and were able to stop giving her the caffeine med. Though we continued with the apnea monitor until she was about a year old (just to be safe)! At 18months old we went through 42 sessions of Hyperbaric Oxygen treatments (HBOT) http://www.hbot.com/frontpage.htm it was after this treatment she began to sit on her own and became more interactive with us and also began taking small amounts of baby food by mouth! This was HUGE for us! At the age of 2 she was diagnosed with Cerebral Palsy. Gracie is now 6yrs old! I cannot believe she is 6! She has had such a rough journey...6 surgeries, and can't even count the hospitalizations from pneumonia's and seizures. She is such a toughie and a very determined little girl. Thanks God for her stubbornness! As of now she still has her G-tube, still doesn't take liquids or meds by mouth but does eat Gerber baby foods by mouth and also Cheetos Cheese Puffs! Her seizures are fairly under control with her Keppra medicine. She uses sign to communicate with us, though her fine motor skills are really weak she manages to use some traditional sign and some that is her own version of sign. She gets around the house by scooting on her bottom and she can stand and cruise along the furniture pretty good though her balance is a challenge! She can climb up on the furniture and in chairs...if she wants it she'll get it...there's that determination again! She is a very happy little girl! She loves her sister and brother and they know just what to do to make her laugh! She is very silly and gets so tickled when they play with her or when something is really funny in a book or on a cartoon! She has a great belly laugh! Sometimes we all get to laughing so hard because her laugh is contagious! She has come so far and although when she was born I remember hoping she would be even farther than she is....when she was a baby I (of course) had hoped she would be walking and talking and eating and drinking....etc. by now. But we are so blessed she has come as far as she has. Ari (Gracie's 10 yr old sister) said to me just a few days ago...."Mom, wouldn't it be so awesome if Gracie just woke up one day and was all better?" And then she said "But you know what Mom, I would kind of miss her the way she is." And that is so true! Don't get me wrong I want her to be "all better" more than anything on earth! But the way she is now is all we know...and it is the Gracie we know! Well, hope this catches you up to date...when she was born Jerry started up a blog for friends and family but after a couple of years we slowly stopped writing in it. So this is our attempt to start it back up again to keep you all posted! Thanks to all of you for your thoughts and prayers for our sweet Grace these past 6 years...keep 'em going! :-)

For those of you who don't know yet where "Gracielicious" comes from here ya go! Natalie's middle name is Grace...and after she was born we all just kinda started calling her Gracie....it just fit. When she was a baby Jerry started calling her "Gracielicious" because she is quite simply.... delicious!