School's Out For Summer!!!

Here are a few highlights of what's been happening the last month:

• First and foremost, after many meetings and much discussion, we signed Gracie's IEP (Individualized Education Plan) on her last day of school - June 6th.  I'm happy to report that Gracie will have a one-on-one para-professional with her daily as she attends Kindergartener.  I so appreciate the school team that came together with us to make it happen.  I firmly believe that this will help keep Gracie safer at school next year....safe against those tree nut oils/proteins that could be lurking everywhere.
• We had a nasty allergic reaction that was the result of petting a dog and then rubbing her eye before we could get her hands washed.  Not only did her eye swell almost closed, we had to deal with asthma-like breathing issues for the next few days after that.  We did visit a pediatrician for that and they are starting to think an asthma diagnosis is in her future.  I hope they are wrong.  
• On Gracie's last day of school (yesterday) we took her to the zoo!  She had a blast...she loved the giraffes, the fish, the otters, and of course the monorail.  She loved being outside too.  It was a cool day, but that is perfect for her.  
• Gracie's days at daycare are awesome again.  Her new teacher is in place and has been well-received.  Unfortunately many of her friends have "graduated" and are leaving...her two bestest friends last day was yesterday.  She does have some fun kids moving up to her class though, so hopefully she'll make some new friends easily.

Enjoy June...and hopefully we'll get a break from the rain soon.

Love,
Lisa, Jeff, and Preschool Graduate Gracie

May 2013 Update

We are mid-way through May and the theme of this month has been time outdoors, whether it has been needing snowboots (for the big 15-1/2 inches of snow we got on May 2nd) or puddle stomping in our tennis shoes, or hanging out in shorts and tank tops once the temps got warmer.   Gracie loves to be outside.  Here are a few highlights from May:

• Gracie's most frequent request, other than to play outside, is to eat on the deck.  So we've been having a lot of our meals there.  She is happy as a lark.
• Gracie's neurology appointment was very positive, she is now 67 lbs, and just a little over 4 feet tall.  Even though her weight has increased, we've decided not to increase her seizure meds.  She hasn't had any breakthrough seizures for almost 2 years now that she is on brand name meds, so we are hoping we can lower the percentage of med to body weight.  This is good news for us too...as our out of pocket for Gracie's seizure meds went up from $3500.00 to $4500.00 this year for a mere 100 day supply.  Any increase's mean our out of pocket increases.  Silly insurance company still won't recognize her need for namebrand, so we get to pay the amount over what they would pay for generic.  
• We still don't have resolution regarding the wording on Gracie's IEP for avoidance of nuts at school for next year.  We had a very productive meeting with key members at school.  We presented our concerns to the Special Education director and asked for a one-on-one paraprofessional for Gracie for next year.  Her allergy is with ingestion and contact and she is still so very oral...she puts everything, including her fingers in her mouth.  She'll be exposed to so many more locations at school next year that many involved feel like it's a wise decision to have one para assigned to her to keep her safe and recognize any potential allergy issues quickly.  We are still waiting on a decision to be made.
• Gracie got a new tricycle...this is not any ordinary tricycle as she is way too big for a kid's trike...this is a Trike-Zilla (I'll have to take a picture of Gracie riding it and post it in the near future).  It will accommodate to 300 lbs and 5'8".  Jeff presented it to her while I was gone and she was none-to-thrilled.  Now that she is used to it, she loves it.  We're still working on being able to ride it independently.  She can't pedal if there is any type of incline....just doesn't have the muscle power yet.  We also have to work on her steering...she is all over the place.  I have a feeling by the end of the summer she'll be a pro.
• Gracie was having a tough time at daycare for a couple of weeks.  She was very possessive of a beloved teacher.  She would scratch, pull hair, etc. of said teacher and anyone who wanted to talk to her, including her classmates, especially during outside time.  This teacher is taking on the assistant director role at Gracie's daycare.  We suspect that she sensed there was something going on...since we've been able to talk with her about that, she has been so much better.  The kid is a smart little cookie, she just can't verbalize all the emotions and questions she is processing.  
• Grandma & Grandpa D have made their way to our city for the summer, so Gracie has been enjoying their visits.  
• Gracie also got to visit Grandma & Grandpa B on Mother's Day...that was great fun also.  She had lots of cousins, aunts, and uncles there to give her attention also.  
• Gracie had a cold recently, it was pretty short lived, but her cough continues.  The cough sounds productive, but it takes her breath away when it comes and it sounds horrible.  I was contemplating taking her to the doctor, but I was hesitating because I fear she'll pick up yet another virus.  She coughs and coughs, but nothing seems to come up...until today.  She is sitting at the computer looking at pictures as I'm getting ready for work.  She has a coughing attack and pretty soon I hear her say "Uh-oh!"  I apparently didn't respond quickly enough...soon a very urgently said "Uh-oh mom!"   I walk out into the living room and she is covered in phlegm.  It's on her hand, it's all over her pants to the point that we had to change them.  It's everywhere!  I'm hoping this might be the end of that silly cough.  (And yes Arlan, this story was for you!)
• Gracie only has 7 more days of school left...where did the school year go.  Daycare has a ton of fun activities planned, so I think she is going to have a fun summer.

I hope May has treated you well.

Love,
Lisa, Jeff, and Trike-Zilla riding Gracie

March & April Update

How did March get past me without an update on our ever sweet, ever growing, ever hilarious Miss Grace?   Here are a few highlights:

• March was a very healthy month for Gracie.  April, not quite as much.  An upper respiratory virus sent us to the E.R. as Gracie was having very labored breathing and wheezing.  She presented with asthma type symptoms.  We ruled out pneumonia.  After a nebulizing treatment she started breathing a whole lot better.  They sent us home with an inhaler of albuteral.  They should have warned us that giving this to Gracie was like giving her speed.   She hardly slept for two nights.  She wanted to, but was so restless, she just couldn't stop moving.  I bounced her (not so easy anymore now that she is 65 pounds - over half of my body weight), I rocked her, I just sat with her, and I did everything I could think of to comfort her.  Naps weren't heard of either.  Between Jeff and I taking turns giving her TLC, she spent all week minus one day at home.  Once the inhaler was no longer needed she had no energy and mostly just laid around playing with her ipad or listening to music.  
• Easter was a huge hit for Gracie this year.  She was excited to see that "Santa Claus" had delivered an Easter basket full of goodies to her.  She spent the day at Grandma & Grandpa B's house and got spoiled by aunts, uncles, and cousins too.  The night before we went there, Gracie was tossing and turning and couldn't sleep.  I asked her what was wrong and was pleasantly surprised to hear her say "I'm so excited!"
• Good News:  We submitted an exception request to the school board to keep Gracie at the school she is currently going to for kindergarten next year.  We are thrilled that the request was granted.
• More Good News:  Gracie would have aged out of her current daycare next school year.  I was totally stressed out trying to find another daycare for her that could accommodate all her needs, not to mention all the love and support she gets at her current daycare.  Her current daycare got their licensed changed, so she can remain there next year as well.  I could have hugged the director for making this happen.  
• We've been working on Gracie's IEP for kindergarten....it's signed and ready to go...with the exception that there is a disagreement on how the wording is written for dealing with Gracie's tree nut allergy.  We are having a meeting at school on May 9th and I'm confident we'll come up with a resolution that all involved are happy with.  
• Gracie has growing again, her pants are getting shorter on her....we have her routine Neurology appointment today, so we'll find out how much she has grown...which will undoubtedly mean an increase in meds.
• Gracie is becoming more and more verbal.  I'm hearing 6 and 7 word sentences at times.  Usually when she doesn't want to do something or is being obstinate.  But hey, I don't mind, she's expressing herself with words, I'll take it.  
• Gracie, the child who wanted nothing in bed with her but her blankie, has taken quite an attachment to a number of stuffed animals and pillows that absolutely have to go to bed with her.  There is hardly room for her in bed anymore.  She knows exactly which ones should be there and if one is missing, you better be prepared to tear apart the house to find it.
• Gracie has also been more interested in her baby dolls lately.  It's fun to see her carrying them around.  This morning two of them had to ride in the car to daycare with us.

We're awaiting some spring weather so we can get outdoors.  The winter has been long and we are so ready for spring.

Love,
Lisa, Jeff, and Gracie Growing Girl

February 2013 Update

A lot has been going on in February for our sweet, ever growing Miss Grace, here are a few highlights:

• The month started out with a crummy virus....fever, chills, vomiting, and no appetite for a week.  But other than that, she's been a very healthy girl...and happy!
• We've started seeing a physical therapist at the clinic again.  We wanted some ideas on how to work on Gracie's leg strength.  We have a new physical therapist that we love (we loved our old one too) who is really great about working with us and understanding that Gracie has a very short attention span and she understands that it has to be fun and motivating to get her to do it.  Gracie loves to see her because as Gracie "want to exercise"!
• Gracie absolutely LOVED everything about Valentine's Day.  She got to hand out little stuffed owls to her classmates at daycare and school.  (As most of you know, Gracie LOVES owls!)  She loved getting cards and small gifts from her classmates and friends.  We took "nut free" pink and red decorated cupcakes to school for her Valentine's Day party there.  She got to wear her blue Minnie Mouse shirt, with the word "LOVE" in pink.  That was a hit also.  We made heart shaped pizzas for supper...another highlight.  Gracie came home from daycare that day, burst in the door with the biggest smile on her face and a very excited "Happy Valentine's Day, Mom!"  That made my day...her smile and her verbal ability to say it.  She said it about a hundred times that night and even woke up at 1:00 a.m. to say it to me again.  I never tired of it.  I love Valentine's Day and Gracie's excitement made it double the fun.
• We made a snowman in our front yard one rainy, snowy Sunday afternoon.  It was a big one...but an hour after we came in the house it crashed to it's demise. 
• We had an appointment with Gracie's Developmental Pediatrician who was very pleased with her progress.  She's made about six months of developmental progress in the last year, which is pretty much the pace we've been seeing.  Most of her skills are in the 2-1/2 to 3-1/2 year old range, with some even going higher, and some of her fine motor skills being a bit lower.  Fine motor is definitely Gracie's biggest challenge. 
• Gracie melted her mommy's heart this month (actually she does every month).  We were laying in bed together one night as she was starting to fall asleep.  She said "Mommy", I said "Yes?", she said "You're special."  Total heart melter.
• The more helpful Gracie can be around the house...the happier she is!  I love how proud she gets of herself.  
• We have a meeting with the school psychologist, occupational therapist, and her teacher next week.   We will get the results of the evaluation they are doing on Gracie which will tell us what school and kindergarten program she will be in next year.  I'm anxious to have this information.

We are hoping for a nice warm March so that we can get outdoors more.

We hope you are staying warm and having a great month!

Love,
Lisa, Jeff, and Gracie

Enjoying January in Good Health

Gracie has had a really good January healthwise.  Other than silly allergies making her eyes red and itchy, she's been a happy and healthy kid.  I knock on wood every time I say this, just hoping I don't jinx it. 

Gracie's verbal skills are exploding again.  Most thoughts are in sentences now...3 or 4 word sentences.  The notes we've been getting from daycare at the end of each day usually have something like "Another fabulous day!" on them.  Gracie really seems to enjoy daycare and the kids in her class are really good with her.  Gracie has been joining in on peer play too.  She's been playing with baby dolls with a few of the other girls.  The other day the kids were playing dinosaur and she chimed in "Gracie dinosaur too!"  She went stomping off with the dinosaur kids!  That night in the tub she informed me "Gabe was a T-Rex!"  That cracked me up, I didn't even know that "T-Rex" was on her radar. 

We had a home visit with Gracie's teacher from school.  Gracie gets very distracted at school from all the other activity, so it's difficult to get her to independently do things such as taking off her mittens and hat at locker time, etc.  Her teacher enjoyed seeing her at home as Gracie was talking a fair amount and they don't see that side of her at school.  She is very quiet there.  She is also quite the helper there.   Some of her classmates are wheelchair bound, so Gracie assists with pushing their chairs at times.

I signed Gracie up for kindergarten last week.  I'm having a hard time with that milestone.  We aren't quite sure where Gracie will go to kindergarten.  She is currently in the midst of an assessment being done by her current teacher and the school psychologist, both of whom I feel have her best interests at heart.  We'll get the results of the evaluation at the end of February and will more than likely know the plan at that time.  I am really hoping she gets to stay at the school she is currently going to, I really feel she needs the extra help and attention and that is the school that can give it to her.  Our home school seems like a good school too, but I just don't think the program there is specialized enough to meet Gracie's extra needs.  I'll wait patiently.

Gracie is a great helper, I'm finding that if I can have Gracie help with things at home, getting food out of the refrigerator, putting things away or getting things for me, she glows with pride.  Last night I was bringing the garbage receptacle up to the house and she grabbed the recycle one and was pulling that up with a smile on her face from ear to ear. 

We are not enjoying the January cold weather.  It's putting a crimp in our outdoor time.  We're hoping it warms up a bit soon.

Have a great weekend.

Love,
Lisa, Jeff, and Gracie the helper

The Weekend

On Friday we spent the day at the clinic for testing...allergy testing to see if Gracie is indeed allergic to amoxicillin and other antibiotics in the penicillin family.  Our first appointment was at 8:45 a.m. and our last appointment finished at 5:00 p.m.   It was a long day!!!  As always, Gracie was a trooper even through many pokes and injections.  She made some new friends and we got good news.  Gracie is NOT allergic to this group of antibiotics...so we now have some options when she has an ear infection or other health issues requiring antibiotics. 

On Saturday we hung out at home.  Jeff's buddy Mitch came to visit that evening and Gracie took a while to warm up to him, but once she did, she plopped herself on his lap and was sad to see him leave.

On Sunday we played outside for most of the afternoon.  We did have to make a trip to Target to buy new snow pants as she had outgrown the pair we had at home and the other pair was left at daycare.  Gracie had a blast sliding down her snow-filled slide and making snow angels. 

She was a tired girl last night, but was awake bright and early at 5:00 a.m. this morning, ready to sing and I think she was anxious to go back to daycare...that is until we actually got there.  She was pretty sad looking when I left.  I'm hoping her day goes well.

Love,
Lisa, Jeff, and Gracie

Happy New Year

Happy New Year!  I am optimistic that 2013 will be a great year for Gracie.

Gracie made it through Christmas remaining healthy and happy!  It was such a fun Christmas.  Gracie picked out two cookies to put on a special snowman plate for Santa.  4 days later she insisted on putting another plate of cookies under the tree for Santa.  I'm not sure if she thought Santa was very hungry or if she thought she might get more presents.  Hmmmm.  This morning as we passed by a Walgreen's store on our way to work and daycare, Gracie informed me that Santa was "bye bye".  There had been some inflatable Santas in the window of the store.  I told her that he was indeed bye bye and that he had gone back to the North Pole to be with his reindeer.  She repeated that back to me and seemed to contemplate that for a bit and accepted what mommy had told her to be true.

So Santa brought Gracie a bounce house for Christmas.  What was Santa thinking?  It takes up half of our family room!!!  Gracie loves it though and I'm hoping it will get her to be a little more active this winter when it is too cold to go outside.

Gracie enjoyed spending time with my family on Christmas Day, Skyping with Grandma and Grandpa D the day after Christmas, and celebrating daddy's birthday on New Years Eve.

We also went forward with giving Gracie her DTaP vaccination on our Christmas vacation.  This is the vaccination that jump started her nasty seizure disorder (Infantile Spasms) at 15 months of age.  We talked with her neurologist and met with a pediatric physician that is an expert on vaccinations.  With their advice we proceeded with it.  She was VERY tired for three days afterward, but no real indications of any additional seizure activity.  Thank you God!

I'm attaching a few photos of Gracie's Christmas fun!!!! (Blog issues...the pictures are on the post below this one!)


Love,
Lisa, Jeff, and Gracie

Christmas 2012

Healthy, Healthy, Healthy!

Do you know how much I love that "healthy" title of this post.  Gracie has had a great week and has been very healthy.  Healthy equals happy! 

On Monday we went to the dentist for her 6 month cleaning and to get a little fluoride applied.  She did quite well, although we did have tears when the noise of the water sucker (does it have an official name) came on and scared her.  She's not the best about brushing her teeth...it's a constant struggle, so I was thrilled to hear there are no cavities.  Her dentist was thrilled to hear her thumb-sucking has reduced alot.  Daycare and school both report that they do not see her suck her thumb, until she sees me...than she wants her palm rubbed and her thumb goes into her mouth.  I guess it's a comfort thing.  She also starts out sucking her thumb to go to sleep, but it's very short-lived and doesn't go back in her mouth for the rest of the night. 

Gracie is very happy to have daddy home after his week long trip to Chicago for work.  Gracie is happiest when she has mommy and daddy at home...that's when life is good.

Gracie loves the sensory projects at daycare.  Yesterday they all painted their hands and then put them on the window of their classroom in the shape of a wreath.  It is so cute and Gracie loves to touch it now that it's dry.  She also noticed that her hands are much bigger than her classmates. 

Tomorrow (12/20) is a very exciting day for us....it's the anniversary of Gracie's Adoption day.  Although she has been with us since the day she was born, this is the day that made it official...five years ago.  As I tell her "We always knew we were a family, but this is the day the judge said 'I now pronounce you a family!'"  That always makes her giggle.  We were going to make cupcakes to celebrate, but I found some sugar cookies with Mickey Mouse's face on them, so we might bake those instead. 

Have a great week.

Love,
Lisa, Jeff, and Gracie

Sick, Sick, and More Sick

It's been a rough December for Gracie when it comes to health.  On Thursday evening (12/6/12) we rushed Gracie to the E.R. as she was shaking uncontrollably and was having labored breathing.  I took her temperature before we left and it was normal...by the time we got to the E.R. it was over 103 degrees.  Our suspicions of another bout of pneumonia were confirmed.  It took over 4 hours and both ibuprofen and Tylenol to get her fever under control.  They contemplated hospitalizing her, but since we live so close to the ER we assured them we would bring her back if we had any concerns.  They sent us to the pharmacy for some antibiotics and home we went. 

All weekend Gracie was well enough to be stir crazy, but not well enough to really do anything.  On Sunday we had a beautiful snowfall and I did let her go outside for a very short time.  That seemed to help lift her spirits immensely. 

On Monday (12/10) afternoon I got a call from a follow-up nurse at the E.R. to let me know that the urine culture they took on Thursday night showed that Gracie also had a urinary tract infection.  We were advised to stop her current antibiotic (we only had one dose left) and to begin a 10-day course of a sulpha antibiotic (Bactrim).  We started that on Monday night.  By Tuesday night Gracie had an incredibly red and blistery diaper area.  I took her into see the doctor on Wednesday morning...I suspected a yeast infection and I was correct.  We got a prescription cream to put on it and that seems to be helping nicely.  Although on Wednesday night, Gracies bottom, legs, and a few other spots were covered in hives.  I stopped the Bactrim and gave her Benadryl.  That seemed to resolve the hives and she got to go to school today.  Needless to say, I touched base with her pediatrician this morning and we are headed back to the Allergy Clinic for more testing. 

On Monday, we also had Gracie's routine (every 4 months) appointment with her neurologist.  Everything looks good there and we will do a seizure med increase just due to her size.  Gracie treated Dr. N. to renditions of "Humpty Dumpty", "Tootie Ta", and another song I can't remember.  She was quite enamored with Dr. N.'s male resident as well and had to give him a big hug. 

I'm hoping for a quiet weekend to just hang out.  I have to help Santa wrap some presents too!!!

Have a great week...and if you have any extra prayers for Gracie's health, we would be so appreciative.

Love,
Lisa, Jeff, and Gracie

Thanksgiving

Our Thanksgiving didn't quite turn out as planned.  Gracie spiked a fever in the wee hours of Thanksgiving morning.  When she woke up, she went to say hello to her dad and vomited and then the diarrhea started.  She also had an upper respiratory virus with congestion and a nasty cough.  So we were very sad to have missed Thanksgiving with my family (we were also celebrating my dad's 90th birthday), but we made the best of it and enjoyed the day with just the three of us.  I did make some turkey breasts, mashed potatoes, gravy, and stuffing.  Gracie invited Dora the Explorer, Goofy, and Mickey Mouse to lunch.  She was happy to sit at the table and pray with us.  Gracie LOVES to say the prayer before meal.  Not surprisingly, she didn't want any food. 

On the Friday after Thanksgiving we put up our Christmas tree and Gracie thoroughly enjoyed helping.  She is so excited about all the lights, decorations, and Christmas music.  I just love to see her excitement.  She also was excited to watch "Frosty the Snowman" on TV.  This was a first for her, as in previous years she didn't have the attention span to sit through it.  She thoroughly enjoyed it this year. 

On Saturday Gracie was in one of the worst moods I've seen her in for a long, long time.  I think being sick and having to stay in the house was getting to her.  Sunday was a little better, but we still saw a few more tantrums than usual.

Gracie was very happy to see her friends a daycare on Monday and had a great day there.  Today she got to go to school too, so I think we'll have a tired girl tonight.

Have a great week.

Love,
Lisa, Jeff, and Gracie

Disney Live

We took Gracie to the DisneyLive show at the civic center on Saturday.  We didn't tell her where we were going, just said we were going to a party, so it was a complete surprise for her.  We had considered taking her in past years since she has a great love of Goofy, Mickey, and Minnie Mouse, but were afraid it would be too much for her from a sensory perspective.  This was the perfect year.  Once we arrived we explained it would be noisy and that people would scream, but they were all good screams and that she could scream to if she wanted to.  We also prepped her that the lights might go out, but mommy and daddy would always be right there.  IT WAS A HIT!!!!!  From the minute it started to the minute it ended Gracie was totally enamored!  The show was great, but I couldn't stop watching Gracie.  She was so excited.  She kept telling the lady sitting right next to her and Jeff (she sat on daddy's lap the whole time at her request):  "It's GOOFY!!!!  Goofy!!!!"  At the end she got to get up and danced around as they sang the last song and sent confetti flying everywhere.  She loved it. We did want her to sit on the stage for a picture, but she wanted NO part of that.  No complaints from us, she did so much better than we even anticipated.  We bought her a soft cover program with pictures of the cast and the characters.  She held that book as if it was gold and she has looked through it so many times that it is starting to fall apart.  Not due to abuse...just lots of use!  She is still talking about Goofy, Mickey, Minnie, and Donald!

Gracie has another cold virus of some sort.  She was running a low grade fever last night, then the chills hit, her nose is running, and she has a cough with it too.  Doesn't seem to be serious, just something that has run her down.  She is home with daddy today.  We're hoping she'll be healthy on Thanksgiving so we can spend some time with family.

Happy Thanksgiving!  I'm off to find my most stretchy pair of pants! 

Love,
Lisa, Jeff, and Gracie

November 2012

A few highlights for the last month:

• Gracie enjoyed Halloween this year and trick-or-treating.  Although she was a very tired butterfly fairy before she ever started her journey through the neighborhood.  At 6:00 p.m. she informed me that she wanted to "do a bed dive".  This is her way of telling us she wants to go to bed, because we make bedtime fun by each taking a dive onto Gracie's mattress on the floor.  At 6:05 p.m. as I got her costume out, she told me "I don't want to".  But by the time we sent her on her way out the door with daddy to go house to house for treats, she was having fun.  A special thanks to our neighbors that checked in with us or were prepared with non-tree nut treats for Gracie's arrival.  That meant alot to us.  As for the other treats that weren't Gracie safe, we did a switcheroo with safe treats for Gracie without her even knowing!

• The weekend after Halloween was an extra special treat for Gracie and our family.  We traveled out of town for a long weekend to attend Gracie's cousin Julie's wedding.  (Congratulations Julie and Brian -- we were thrilled to be part of your special day!)  We got the privilege of taking Grandma & Grandpa B. along and our hotel rooms were adjoined, so Gracie got some great quality time with G&G.  She also had a great time at the wedding seeing all of her cousins and she did really good through the ceremony as well.  She loved the music and would pick up a hymnal whenever the music started and would start to sing.  She didn't know most of the words, but she still shared her beautiful voice with us.  She also had fun waving to daddy across the church while he videotaped the ceremony.  The dance was an extra special treat for Gracie, although it was short-lived as Gracie was very tired and started coming down with a cold.  We try not to let her get too overtired as she's not so nice when she is tired, not to mention that seizure breakthrough is always a possibility too...one were not willing to risk.  

• Gracie's had a cold all last week, into this week.  She's felt pretty miserable, but it's been nothing more than your basic head cold...that is until she started pulling at her ears.  I took her in to see "Dr. Lisa", which Gracie thought was quite funny because she knows I am "Mommy Lisa".  Gracie was good as gold as Dr. Lisa checked her out.  I was surprised to find out she did not have an ear infection, but she did have a retracted ear drum.  There is nothing they can do for this, it has to pop back on it's own, but I'm told it can be more painful than an ear infection.

•  The neighbors have an inflatable snowman, as well as an inflatable Christmas tree with a deer and some other animals in their front yard.  Gracie LOVES this and gets so excited when they are inflated in the evening.  They have some fun colorful lights too and she is so into it.  We've also been singing fun Christmas Carols on our way to work in the morning.  I'm amazed at how many she knows the words too.  I think this holiday season is going to be a fun one.  

Have a great week!

Love,
Lisa, Jeff, and Gracie the Caroler

A Trip to the Pumpkin Patch

It was a beautiful Fall weekend.  Saturday started out rainy, so we spent our morning just hanging out and getting some house things done...laundry, a little baking, and a little cleaning (very little).  Since Gracie can't have donuts due to her food allergies (pretty much every commercial donut is made in a facility that uses tree nuts), we bought a Babycakes mini donut maker.  We tried that out on Saturday morning.  She was so excited about it!  She was right there helping me every step of the way.  But when it came time to actually eat the donuts, I don't think she was all that impressed.  Jeff and I thought they were pretty good though. 

On Sunday we went to the pumpkin patch and apple orchard.  Gracie had a great time.  I think the highlight for her was the tractor pulled wagon ride.  She didn't want to sit down.  She stood for the whole ride, holding on for dear life and the bumpier the ride, the happier she was.  At one point she said to me:  "It's a party!"  She also said "This is fun!" 

We also ran into some former daycare friends at the pumpkin patch, so it was fun to see them.  Although Gracie seemed a little reserved, even though I know she loved hanging out with these kids. 

We got three pumpkins...one for dad, one for mom, and a smaller one for Gracie.  She especially likes that one because she can carry it around.  She found it hilarious when she accidentally dropped it and it rolled all the way down our driveway and into the street and I had to go rescue it.  She giggled the whole time it rolled.

The rest of our afternoon was spent outside enjoying the day.  Gracie slept so well last night.  I think all of the fresh air was so good for her.

Have a great week!

Love,
Lisa, Jeff, and Gracie-the pumpkin roller

A Crazy Month

It's been a crazy month, here are a few hightlights:

• Gracie had yet another ambulance ride to the E.R.  I went to an apple tasting party with her at daycare.  She was very snuggly with another mother there who had beautiful long black hair.  Gracie kept touching it.  I didn't think to wash her hands (why I didn't think to, I don't know - because I know so many shampoos have nut oils in them).  On the way home I could tell something was not right.  By the time we got in the house, she was having problems breathing and had the hacky cough that comes with an allergic reaction.  So I injected her with epinephrine and called 911.  So Gracie and mommy headed in the ambulance to the hospital.  Daddy followed a few minutes later.  
• While at the hospital for her allergic reaction, she spiked a fever.  A fever that lasted 10 days.  We are not sure what caused it, we believe it was viral, but she had us worried, because her only other symptoms were loose stools, no appetite, and no energy.  
• Gracie has started with the Special Olympics Young Athlete's Program.  I think Jeff described it as organized chaos.  We all love it.  There is unconditional acceptance of all levels of abilities and everyone is so positive and enthusiastic.  
• Gracie is really enjoying the Halloween decorations in our neighborhood.  The house directly across the street has gone all out with decorations and Gracie gets excited with each new thing that is put out.  They do have a lit up spiderweb on their house that Gracie insists is a stingray.  It is sort of shaped like one, so I can see where she is coming from.  They also have tombstones all over their yard and Gracie informed me they were "rip".  I have no clue how she knows "rip".  
• Gracie helped Jeff and I celebrate our 15th wedding anniversary this week.  In the morning she insisted on a group hug.  Gracie and daddy made some flowers and a vase out of foam for mommy.  They are so cute.  (We are finding that Gracie is allergic to alot of flowers, so don't feel comfortable having fresh flowers in our house.)  We also had take out from Olive Garden...you should have seen her eat!!!!  I don't know where she put it all.  Then we had a dance party in our living room.  It was a great way to celebrate.

We are hoping to make it to the pumpkin patch this weekend.  We need some pumpkins to make our house look festive.

Have a great weekend!

Love,
Lisa, Jeff, and Gracie

Another Ambulance Ride

Has it really been two weeks since I've posted.  I guess that means we've been busy!  Gracie has been learning so much and has been using the word "yes" alot.  I love that.   Jeff traveled to Chicago for work for 4 days earlier this week and Gracie definitely misses him when he is gone.  Her favorite phrase when he is away is "I want to see Daddy!"  On the final day of him being gone, she was asking for him alot.  Very nicely I said to her "Can I have a different word?"  And very sweetly she looked up at me and said "Please!" 

On Sunday, I took Gracie to her school for a fundraising event for a new playground.  They had inflatables and a big bounce house.  Much to my amazement, Gracie ran right up to it and wanted to go in.  She has always been scared of them.  I was so proud of her bravery, but it about broke my heart to see her in it.  She never could gain enough strength and balance to stand up.  Every time she would just about get up, another child would bounce and she would lose her balance and fall.   Then we headed to the Zumba dance instructors who were awesome with Gracie.  So she danced for quite a while.  Then she got to meet Chuck E. Cheese.  Another great highlight for her.

On Monday, Gracie had helped out in the daycare garden and when I picked her up her cheeks were blaze red with a definite allergic reaction and some blistery welty type marks on her cheeks.  They were definitely swollen too.  We suspect her allergy to mold might be the culprit.  I took her home, washed her up and gave her some Claritin.  By morning, she was looking much better. 

On Tuesday, I took her to daycare and she got on the bus as usual, by the end of her bus ride she started going into an anaphylaxis allergic reaction.  Gracie's emergency plan was followed, an epi pen was administered, the ambulance called, and by the time she made it to the E.R. she was cool and calm and doing well.  We'll never know for sure what caused the anaphylaxis, but we suspect it was a delayed reaction from the garden mold the day before.  Or she could be sensitive to a plant that she touched too...she breaks out from both dandelions and mums, so it would stand to reason that there are more plants that cause problems for her.

So Gracie and spent the next 6 hours in the E.R. - which is standard practice as allergic reactions many times go in waves.  She was given some steroids that help with that and we actually got to leave a little bit earlier because she needed seizure meds and they didn't have what she needed.  I stayed home with Gracie on Wednesday just to monitor for any allergy returns.  We still see a little bit in her cheeks, but have a prescription for another dose of steroids should we need it.

Gracie was thrilled that daddy returned home on Wednesday.  He brought her a stuffed Goofy from Mickey Mouse.  I wish I would have had the video camera handy...I've never seen her so excited.  She LOVES Goofy!!!!

Gracie had a great day at school yesterday and was in the best of moods this morning.  I'm looking forward to the weekend.

Love,
Lisa, Jeff, and Gracie

To Vaccinate...Or Not to Vaccinate?

Gracie had her 5 year old well child visit with her pediatrician yesterday.  She is a healthy girl and was sooooo cooperative!!!!  The two questions on our mind:

• A referral to see the Speech Pathologist.  She wanted to see us back before the school year started, but we can't just call and make an appointment.  Each time there needs to be a referral from pediatrics.  So we'll be meeting with her on October 30th.
• Vaccinations:  Gracie is currently up-to-date and compliant with her vaccinations.  I'm very pro-vaccination, however prior to age 6 we need to have quite a few vaccinations take place.  One of them being the Dtap vaccination....part of this vaccination is for pertussis (whooping cough).  There is currently a large number of cases of whooping cough in our community and surrounding communities.  Our hesitation for having her vaccinated goes back to her last Dtap vaccination at age 15 months old.  We had just found out that Gracie had epilepsy, we had just started her on anti-epileptic meds, seizures were not well controlled at that point and she had her 15 month vaccinations, and then came the on-set of INFANTILE SPASMS...an intractable seizure disorder that changed our world.  3 months later we finally beat the I.S. monster using large doses of steroids and a non-FDA approved medication that we had to have sent in from Canada.  Gracie's weight ballooned, she became constantly irritable, and she experienced many milestone delays...you don't learn very easily when your having 60+ seizures a day.  Did the vaccination cause the seizure disorder???  Gracie was probably pre-disposed to I.S., but it is believed the vaccination set the I.S. in motion.  So what happens if we vaccinate her with this again???  We've had conversations with Gracie's neurologist who we trust immensely.  She feels that she would much rather treat the seizures than possible brain bleeds that could be the result of having whooping cough.  That certainly makes sense, but I'm not quite ready to go that route yet.  So I asked if we could have a consultation with the Department Chair for Pediatrics, who also specializes in Infectious Disease and is known as the resident expert regarding vaccinations.  Our pediatrician supported our request 100% and we are scheduled for an appointment in early December.  We would appreciate any prayers for guidance.

It was a cool evening last night and Gracie was having a blast playing outside on her playset and with her pretend lawn mower...can you really cut grass while mowing the deck?  Hmmmm.  This cool weather agrees with her.  She was so happy outside.  I just love to see it.

School and daycare continue to go great for Gracie this year.  She is really at a great age and I'm so incredibly amazed at how awesome her daycare friends are with her.  Just this morning we were surrounded by a group of young girls (3 & 4) that were giving her little letters and were chatting up a storm.  I seriously considered skipping work and playing with all of the sweet children at daycare.  I wonder if my boss would have noticed I was missing?  Mitch - Can I stay at daycare and play one of these days?  :)

Have a great weekend!

Love,
Lisa, Jeff, and Gracie Good Girl

The School Year Has Begun

Gracie has had a fantastic couple of weeks!  She still has a bit of a cough from her pneumonia, but it has subsided greatly.  It's amazing what feeling healthy does for her mood.  She has been the happiest kid lately and so verbal too.  I accused Jeff of increasing her meds again, but he assures me he hasn't.  The other night she said a seven word sentence....she was laying on the floor and didn't want to go to bed.  I told it was time to go read books in bed (our nightly routine) and she told me "I don't want to read any books."  I think she was surprised by the big smile that came to my face as I counted out the words she spoke. 

Gracie's good buddy at daycare left to go to school.  That last day was pretty sad!  Maddie just kept wanting to give Gracie hugs.  The realization for Gracie came later when Maddie wasn't there.  Now she tells me that "Maddie is bye, bye."  The she tells me and signs "sad".   A new little girl named Dana has started in Gracie's daycare room and they are making fast friends.  Dana is the same coloring and has the same type of hair Gracie does, although Dana is much smaller in build.  The similarities are not lost on Gracie, she picked up on this immediately and has gravitated to Dana.  I'm told they get along very well. 

Gracie started her third year of ECSE Preschool last week.  Last year was a pretty stressful year at school for her, it was turning around toward the end with the change of teachers and classroom settings.  This year it has gone remarkably smoothly.  I love her teachers and paras and Gracie really seems to love it.  The bus driver and para are the same as last year and I love, love, love both of them too.  So does Gracie. 

Jeff's busy season of working alot of weekends, long days, and travel out of town have begun.  This does not sit well with daddy's girl.  The first words out of her mouth each morning are "Go see daddy!"  When she finds out that he has already left for the day, she gets sad.  There are some nights when she goes to bed without seeing him too.  We'll just have to make sure the time they do have together is quality time. 

We are looking forward to the cooler fall temps.  That means more outside time for us.

Love,
Lisa, Jeff, and Gracie the school girl

Pneumonia

We've had a crazy couple of days.  Gracie was running a fever when Jeff picked her up at daycare on Thursday.  He stayed home from work with her on Friday and her fever would come and go.  On Friday night her temp spiked to 105.  I was quickly on the phone with the nurses line.  They told me everything we were doing was right.  I didn't feel terribly comfortable with that knowing our little pumpkin.  She was burning up and shaking uncontrollably from the chills.  She also had very labored breathing.  We finally got her temp down a bit, but she was so restless.  She finally fell asleep about 11:00 p.m.   On Saturday morning at 6:00 a.m., it started all over again.  Jeff had to work, so I packed a quick bag and headed to the E.R. with her. 

At the E.R. there were so many trauma patients, that they put us in the intensive care area...not because we needed to be there, but so the doctors could be close to us and their emergent patients.  I was relieved when 8:00 a.m. came and the pediatrician (who I really liked came in)...that's when things started to happen for us.  She sent us for a chest x-ray and sure enough it came back positive for pneumonia.  She also gave Gracie a red popsicle for being such a good girl.  Gracie ate it like a big girl, but you just can't help the drips, there was red popsicle everywhere...including the floor of the x-ray area. 

So they gave us some antibiotics and sent us home.  Our weekend was pretty low key.  Gracie didn't have a lot of energy and her fever continued to spike and then come down with ibuprofen through Monday.  By Tuesday we had the fever under control, but the coughing is pretty nasty.  She's been a trooper though.  Since Jeff had to work on Saturday, went to a family event on Sunday (Happy 50th Anniversary Ann & Denny - so sorry we missed your special day), and I stayed home with her on Monday and Tuesday, she has been missing daddy and constantly tells me that she wants to see daddy.  On Monday after her bath, she took her medical alert bracelet and pretended she was reading it.  Here is her interpretation of what it says:

"Dear Mommy, I love you.  Love, Gracie.  Dear Daddy, STAY HOME!" 

And I thought it said "seizure disorder and allergic to tree nuts".   She is a little comedian sometimes...and of course since I laughed, she's been going around the house saying that alot!!!!

Gracie is back at daycare today.  She was a little hesitant at first, but was definitely ready to see her friends.  It was so sweet, after she settled in there was a three girl hug with Gracie in the middle.  It was priceless. 

She's still a bit tired and has coughing fits if she does too much of anything, but is happy and fever free.  Now if we can only keep her cool in the heat today.

Love,
Lisa, Jeff, and Gracie the germ fighter

Healthy Again!!!!

After 14 days with the diarrhea, I am happy (overjoyed actually) to say that Gracie is healthy again.  She went back to daycare on Monday.  Her friends were very excited to see her and she was pretty happy to see them too!

Here are a few updates:

• Every 4 months Gracie has an appointment with her pediatric neurologist to keep an eye on seizures, as well as neuro development.  We recently had this appointment and Gracie was incredibly verbal and her neurologist was thrilled to see all of her new verbal skills, as well as listening and attending skills.  Seizures are well controlled, but due to growth (Gracie is now 4 feet tall and 62 pounds) we did increase her seizure med dosage.
• Gracie knows all of the capital letters of the alphabet excluding three letters.  We are also working on being able to sign those letters and she is doing great with that too.  She doesn't always get perfect hand formation, but she tries very hard.  
•  Yesterday at daycare, Gracie approached a little boy who was playing trains.  She asked him "Gracie play?"  Then she sat down on the floor and began trying to put some wooden tracks together, she didn't quite get that, but kind of stacked them and then ran her train over them.  Gracie doesn't usually engage in too much actual play with toys, she moves them from one place to another, so we were pretty excited about this.
• Today at daycare a sea life exhibit will be there.  I'm told there will be fish, starfish, sea horses, baby stingrays, and much more.  I'll be anxious to hear what she has to say about her day.
• Gracie has been having very restless nights lately.  She's been talking in her sleep a bit too, so I suspect she is dreaming.  I did ask her this morning if she had lots of dreams last night and she said she did.  I asked her if they were good dreams or bad dreams and she said "bad dreams".  What do five year olds dream about?  Hmmmm.  I do know that when she does seem to be having a bad dream and I rub her back and tell her that mommy is right here, it does seem to calm her.
• Gracie undressed herself for the first time the other day and was quite proud of herself.  I was putting some clothes away in her room when I came out to the living room to find a very proud girl with only a pull-up on and her dress in her hand.  
• Gracie has a great love of Bill Cosby and has started doing impressions of him, much to our amusement.
• I registered Gracie for the Young Athletes Program through the Special Olympics for October and November.  It's a neat program where occupational students volunteer their time to work with 2 to 7 year olds with intellectual disabilities to learn to enjoy sports.  I'm anxious to see what Gracie thinks of it. 

We are loving the cooler weather!

Love,
Lisa, Jeff, and Gracie