September 2013

I wasn't a very good blogger this summer...that must have meant we were having fun, right?  Gracie did have a good summer.  There were a lot of fun events at daycare and on the weekend the most requested activity was "Water Day at Gracie's House", which consisted of putting out the sprinklers or the pool.

Here it is September already.  Gracie is officially a kindergartener!!!  She splits her days between being with her kindergarten class and the special education room.  Gracie does have a one-on-one para-professional to support her and I think that is key to her safety and her successes.  She is doing so good in the kindergarten room, that she spends most of her day there.  She spends her afternoons at daycare and is making some new friends, as all her former daycare mates left with the start of kindergarten.

September has proven to be a difficult month for our family.  Gracie's Grandpa B. (my dad) had a massive stroke, was airlifted to the hospital, where he stayed a week until his passing on September 11th.  Jeff was in Chicago for work at the time, so we had him fly back a few days early and I spent most of my days and some nights at the hospital.  While daddy took very good care of Gracie, her routine was messed with and that's not a good thing.  Gracie also struggled and still struggles to understand that Grandpa isn't coming back and she can't see him.  So we are working to support her as best we can.

Gracie has a nasty cold and her asthma symptoms are back with it.  The albuterol is helping, but not fast enough for my liking.  I was pretty close to taking her to the E.R. this morning.  We'll see what tonight brings as it always seems worse at night.

Gracie continues to grow....I can't keep the girl in shoes and clothes.  She is now in size 14 tops, some bottoms too...but mostly 12 bottoms.  Size 4 shoes.  As she grows it gets harder and harder to find her age appropriate clothing as most kids in this size are much older.

We decorated our house for Halloween...Gracie LOVES Halloween.  She loves the pumpkins and the skeletons, but the most popular item is a Frankenstein window cling.  I think October will be a fun month in anticipation of Halloween.

I'll try to be better about updating.

Love,
Lisa, Jeff, and Gracie the Kindergartener

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