Gracie is TWO!

It’s been along time since we’ve posted. I’ll try to get you caught up in 500 words or less!

Grace had yet another eye surgery in November and with her glasses her eyes are now within 10% of normal. No more eye surgeries scheduled for a long time. She has had a few colds, but for the most part she has been very healthy. She is getting stronger and stronger. She now gets into her ZipZac and wheels herself purposefully to her play table that was built by Jill and Grandpa Persick. Check out the last picture on this blog.

Gracie turned TWO on January 5th. Jill asked everyone to wear a hat to the party. She LOVES hats and especially loved Grandma Quinlan’s hat. She laughed and laughed when she saw it. She has quite the personality. Always gives us a huge smile when she sees anyone she knows. She has that ability to win over the hearts of everyone she meets.

Grace still isn’t eating much by mouth. Her GI doctor has Jill and Sean feeding her 30 ounces of milk through her NG-tube overnight using an IV pump. To help her bladder void all that liquid overnight they place a foley catheter and collection bag so she can void while she’s sleeping. Then during the day they can concentrate on feeding her food by mouth without the pressure of getting the liquids in too. They have also been using a juicer to provide her with the nutrition of vegetables and fruits. Prayers are needed to help Gracie eat by mouth. She is definitely a mystery. Even the doctors aren’t sure why she’s not eating. Her urology doctor said that her kidneys have never looked healthier. Good job Jill and Sean.

Jill has gone back to work at the Marion House on Tuesdays. She works from 8:00 am ’til 11:00 pm. That’s a long day, but she can get in lots of hours without having to work more days. Grandma Quinlan graciously and happily babysits for Grace and Blaze until Sean gets home from work. Thanks Chris!

That’s about it for now! Thanks for keeping up with our blog.

Grandma Lin

I'm TWO years old!

My little brother, Blaze, is 3 months old. Isn't he handsome?

I got a new bike from Geeya and Grandpa for Christmas. Now I can go for rides around the block this summer. (With the help of mommy and daddy.)

Merry Christmas baby Jesus!

This is my new play table. I can wheel my ZipZac right up to it and play with all of my toys! Mommy and Grandpa Persick made it for me. Thanks



Gracie’s First Steps!

This video pretty much says it all…..  She started moving her Zip Zac sometime around the beginning of September! Jill has been so busy with Grace and her pregnancy that we never got around to posting this video! She’s getting stronger and stronger every day. She’s still not real motivated to move it on her own without someone constantly encouraging her with a hat or empty water bottle (which she loves!) Now that Blaze has arrived, she may have to be a bit more self-motivated and start rolling herself around the house and explore.

I’ve added a very cute picture of Gracie’s new little brother as well.

Blaze Joseph Quinlan was born at 10:16 AM on Sunday, September 29, 2013. Weighing in at 7 lbs. 3 oz. and 20.5 inches long. Everyone is doing great. Gracie doesn’t like to hear other babies cry, so that’s something that she’s gonna have to get used to.

Blaze Joseph Quinlan - 2 days old

Gracie meets Blaze!



Not all better…. but not sure why.

Just a quick update on Grace. After her shunt revision last week, she was still vomiting…. So Jill and Sean took her back to Children’s on Thursday for another MRI of her head. Everything looked good. They also tapped her shunt again and it was drawing just fine. So, tomorrow morning Jill, Grandpa, and Grace will head back to Children’s. The GI Department will do a endoscopy to see if there is anything in her throat or tummy that would be causing her vomiting. Maybe it’s something as simple as reflux. She will have to be put out again to do the procedure. Pray that they find something this time!

UPDATE - Gracie update! Endoscopy went well. Nothing out of the ordinary. Biopsies were taken and results will come back next week. GI doctor thought it might just take Grace a while to recover from the shunt revision. I guess we’ll just have to be patient and let Grace do things in her own time. They inserted a new NG Tube which should last for at least a month…. if she doesn’t pull it out on her own! She’s already done that twice.

Cute picture of Grace chilling out in Geeya’s pool yesterday.

Ill start eating..... you just wait and see!



ALL BETTER!

Grace has already taken over 10 ounces of milk by mouth and she actually opened her mouth to take the bottle. She is talking up a storm and seems to feel so much better…. even with an incision in her head and a bunch of stitches! She can take a bath tomorrow. Jill said that when Dr. Vitolla, Gracie’s GI doctor, came in to see her this morning, Gracie grabbed on to her NG Tube and pulled it right out of her nose! I guess that was her way of telling the doctor that she didn’t need it anymore. She’s quite the gal!!!

Jill and Sean checked out of the hospital with Gracie at about 2:00 PM today. Should be home in time to quietly celebrate the 4th of July in De Pere!

Here are a few after pictures.

Sure glad Mommy and Daddy were there when I woke up!

I feel so much better... and they even gave me a little haircut!

Im gonna have an awesome scar on my head. Good thing those ladies at Classic Dimensions will know how to style around that!

I love my daddy.



Shunt Revision – July 3, 2013

For the last few months Grace has been having some issues with a decreased appetite and vomiting. These are two of the four signs of a shunt failure. The two signs that she didn’t display were irritability and sleeping more than usual. She was rarely crabby and hardly ever takes extended naps AND she LOVES to be held up-side down. This led Jill and Sean to believe that it wasn’t her shunt. Doctors, Speech and Language, OT, and PT  were all pulling at straws trying to determine what was causing her to become “failure to thrive.” (This means that she had not grown significantly for the last 6 months.) Grace was refusing almost everything by mouth. GI finally suggested that Jill and Sean use an N-G Tube to feed her. Even with that in place, she was still vomiting now and then, some days more than others.

Yesterday Grace and Jill drove to Children’s Hospital in Milwaukee for an MRI of her head to see if her shunt was actually working. The MRI showed inconclusive results, so today they were planning on drawing some cerebral fluid out of her shunt by inserting a needle in the part of her shunt that you can feel under her skin on her head. IF the fluid came out easily, they would then inject a blue dye and watch how the dye traveled through the shunt. This would have determined whether the shunt was working or clogged somewhere. HOWEVER…. while drawing the cerebral fluid, her shunt flattened which indicated that something was wrong. No need to put in the dye.

Grace was immediately scheduled for a shunt revision tonight. She went in for surgery at approximately 7:00 PM. Jill just called at about 9:00 PM to let me know that little Gracie was out of surgery and in post-op. They will be able to go in to see her soon. Dr. Lew explained to Jill and Sean that the only part of the shunt that needed revising was the part that was placed into her ventricles. Because she has grown, the tubing was no longer placed properly in her ventricles. With that fixed, she should be good as new in about a week.

I can’t even count how many surgeries this little girl has already had in the last 18 months. Certainly more than I’ve had in my lifetime.

Jill will be posting more as she knows more tomorrow.

For tonight…. Good night, sleep tight little Gracie.

Love Geeya (Lin Persick)

I love playing with Grandpas hat!

Looks like it might be a little big for me.

Sure glad Grandpa is here to hold my hand! These test can sometimes be scary.

Is this a ride at Bay Beach?

Inserting the needle to draw some cerebral fluid from Graces shunt.



June Update!

Not sure where the time has gone. May came and went…. without a post. So here’s a June update.

Grace had her check up at Spina Bifida Clinic and got some good news! Her kidneys have never looked better. For a while we thought she was going to need surgery sometime this summer, but after some tests, the doctor canceled the surgery. She also visited her eye doctor and she has her cute little glasses again. She will wear them for a month or so and then if there is no change another corrective surgery will be done. She continues to get stronger and can say “Da Da.” Jill keeps trying to get her to say “MaMa” but it’s just not happening.

Grace also had a “sleep study” while at Children’s Hospital. We were hoping that she could get off of night time and nap time oxygen but the test showed that she still dips down into the 68% range when she enters REM sleep. Doctors are looking for her numbers to stay around 95% with only a few dips. They want Jill to keep an eye on her and report back in a few months.

Here are a few new pictures of cute little Gracie.

All wired up for my "Sleep Study" at Childrens Hospital.

Sure is nice to have all that goop out of my hair!

I really like graham crackers.

Ive been trying to use my ZipZac!

I just need to get a little stronger.

Mom and Dad took me to the De Pere Memorial Day Parade. Looks like Mom ate way too much candy!!!!



April Update!

April is here, but where is Spring?

Gracie’s eyes have recovered nicely from her revision surgery in the middle of March. She is required to wear a patch over one of her eyes for about an hour each day to strengthen her eye muscles.

Physical Therapy and Speech have been added to her “Birth to Three” services. OT on Monday, PT on Thursdays, and Speech once a month. PT brought her a new “toy” yesterday called a STANDER. (See picture) She’s so tiny that the stander is a little bit big for her right now, but she will eventually grow into it.

I like standing up!

Fun was had by all of the grandkids at Geeya and Grandpa’s house on Easter Sunday. They all had a chance to find their Easter baskets and 15 colored Easter eggs filled with goodies. Gracie’s were green! Hope you all had a wonderful Easter and were able to spend time with family and friends.

Happy Easter everyone!



Successful Eye Surgery

Just wanted to let all of you “Gracie” fans know that her surgery went very well. She is back home and smiling up a storm. Her eyes will be a little blood shot for awhile, but she seems to be seeing a lot better! Thanks for all the prayers that were sent her way. She’ll be wearing arm restraints for a few days so she doesn’t scratch her eyes. She doesn’t seem to mind at all.



Eye Surgery

Grace will be having her eye revision surgery this Tuesday at 7:00 AM. Please pray that God will give the surgeon the skills necessary to complete the surgery successfully and that Grace will have the strength to tolerate yet another surgery to her little body. She always pulls through with flying colors, but a few prayers can’t hurt! Let’s hope this is the last one for her eyes.



Telethon Video

For those of you that were unable to watch Gracie’s TV debut, here it is! ENJOY!



Telethon was a big success!

The CP Telethon collected almost $1,400,000.00 in pledges over this two day event. A lot of kids and adults will benefit from the services offered at the CP Center because of the generosity of the people of Northeast Wisconsin. Grace was a big hit too. Here are a few pictures from her TV debut.

One additional note: Gracie will be having her second eye surgery on March 12th. Please send your prayers her way. Jill, Sean, and Grace will be returning home on Wednesday so she can recover at home.



CP Telethon

Hi Everybody! Just wanted to let you know that Gracie will be on the CP Telethon tomorrow (Sunday) at around 2:30 PM. Her OT will be interviewing Jill and Sean about the services that are provided to Grace by the CP Center. I think they want to let people know that their services are not just for those people with Cerebral Palsy, but for many others with special needs. Grace receives her “Birth to Three” services through the CP Center. Be sure to tune in to WBAY-TV. (Channel 2 out of Green Bay.)

Here’s one of Gracie’s latest videos for your enjoyment!



Memories of Grace and Glory’s First Year

The video you are about to see is the story of Grace and Glory’s 1st year of life and all that she has gone through. Just one small way to thank all of you for your support and prayers. ENJOY….



Grace was 2nd out of almost 200 kids!

The voting is over and I ended up in 2nd place out of almost 200 kids. I would say that was quite an accomplishment! Thanks to all my fans. 

Without you this would have been impossible. 
This won’t be the last contest for me, so keep your voting fingers ready.

Thanks everybody,
Gracie

Thanks everybody for sending all your votes my way!



“Most Adorable” Vote for Gracie!

http://photos.parents.com/most-adorable-kid/2013-01-21/wrvn

Please vote for little Gracie in the Parents Magazine’s “Most Adorable Kid Photo Contest.” There’s a $200 gift card coming her way if she wins!!!

Here is the link to take you to the site to vote! I believe you can vote once each day….  so go back again tomorrow and so on and so on and so on!