Ballerina Avery

Ballerina Avery

Wednesday, October 23, 2013

Our princess Avery, turns 4!

Avery turned 4 on 10-8 and we had her party the weekend after on the 12th. When this little one has a birthday we celebrate..BIG!!We had close friends and family over and it was a really nice party. Lots of treats, a bounce house, silly string, and lots of wonderful presents. Avery loved every second of it!

Avery with all her goodies


posing with her cake

Avery, Kaylin and Lexi..cake and ice cream time!

silly string

YUM

Caramel apple bar

Avery flopping around in the bounce house

present time

birthday girl

Daddy and Avery with playing silly string

BLOW!

Making a wish

More presents

Avery and Papa

My little princess

Avery's cake, she wanted pink and purple

Mom and Avery

Big sissy Mya



Mommy and Avery bouncing

LOVE!


Where the friend sat..

Lillian and Avery

happiness

some of the gang, Aidan, Travis, Mya, Avery, Kaylin and Lexi


Infusion 62 -27-13. Infusion 63, 10-11-13, Infusion 64, 10-23-13

They all went pretty good. Dad was here to hold Avery for the the last one so that was nice. Today's infusion 10-23 Chelsea brought magic cream...EMLA Cream (lidocaine 2.5% and prilocaine 2.5%) is an emulsion in which the oil phase is a eutectic mixture of lidocaine and prilocaine in a ratio of 1:1 by weight. This eutectic mixture has a melting point below room temperature and therefore both local anesthetics exist as a liquid oil rather than as crystals. It is packaged in 5 gram and 30 gram tubes. I have heard of people using it and people have told me to use it and we just never did. I hate that I waited so long. She moved a little when the needle hit the vein but other than that is was painless for her!

Wednesday, September 25, 2013

Right around the corner...

Her birthday is right around the corner! October 8th she will be 4..WHAT!>>!>!>!?I get tears in my eyes just thinking about it! We are so lucky to have medicine that keeps her going. Who knows if this medicine didn't exist..maybe she wouldn't either. :( I believe in miracles! I just can't stop thinking about how far she has come! At her second birthday she couldn't walk and now she is so active and running! She does most things a "normal" kid would do. I just didn't know and still don't know and that is why we will celebrate the big 4! along with every other birthday that comes our way! Can't wait!

Therapy days at school

This year the school has so many half days etc so Avery class since they are in the afternoon will have to make up a lot of time...so they are doing therapy days. We went to our first one today and we had a really great time! First of all, I love her teachers and school therapists so how could we not! We had circle time, and obstacle course, bike riding, snack and ribbon twirling! Here are a couple videos. I can't stop thinking of Avery 4th birthday coming up..and at her 2nd birthday she didn't even walk...This is unbelievable to me! Medicine, determination and working our butts off got her here:



Avery did great and followed directions like a champ!

Summer Therapy

Therapy at Kids in Motion this year was great! Avery just excelled! She changed so much and got so much stronger! Her speech is fantastic. Alisha her speech therapist at KIM tested her expressive language at the end of the summer and Avery scored above average at 4 years 1 month..huge progress from the beginning of the summer. Avery also improved her speech comprehension to 5 years 6 months. YUP, you read that right she understands EVERYTHING we tell her and has pulled the wool over our eyes for months if not years! I treat her like a baby and I MUST stop. It is only hurting her. Things changed after I got that news ;) SO, SO proud of my little widget! She also did great with her PT..Mary showed me the last day that she could completely jump off the ground! WHAT?! Amazing. Both feet at the same time up off the ground...not super high but I'm still proud. OT went terrific too. She learned to take a shirt off, which is huge! She was cutting in record time for her and also making beaded bracelets in record time! Everyone notices a difference! Way to go!
Avery with putty slippers. Getting those muscles strong!

My sissy

It has been a huge adjustment for all of us with Mya going to Kindergarten this year! We miss her so much during the day. Avery misses her the most I think :) That is her playmate, her best buddy and they play great together..MOST of the time. Mya says she doesn't miss us while she is at school..but we all know the truth..how could you not miss us? LOL This is an assignment Mya had at school. They read a book called "Have you filled a bucket today?" I was SO proud of her that she did this all on her own without having to be prompted!


best friends!


A horse is a horse....

We went to Chelsea's bridal shower in Mt. Pleasant and had a great time! Avery was such a good girl. While there she got to ride on Chelsea's Moms horse! She loved it!

ouch

Back to school means more hours wearing her braces. WELL, we were bad parents and didn't make her wear them as much as we should have over the summer so she wasn't used to them. She got blisters the first week back. So we had to do an emergency run to Livonia to get them adjusted by Edgar(who came in on his day off to do so!

Avery icing her ouchies :(

Back to school

Avery started back to school Sept 4th with a tour of the school and a meet and greet and her actual first day was the 5th. She is in the LEAP program(program for special needs) and goes in the afternoon 12:25 to 3:35 and gets to ride the bus again. She also has the same teacher and para from last year..and I was excited because I love Mrs. Weimer and Mrs. Keener! I was however really worried about the afternoon class because of her nap. I have a feeling this girl will nap for a long time..but...we are only squeezing them in when we can right now. I kept her in the afternoon class because her besties are in that class. All she talks about is her friends and how much she missed them over the summer. I would never want to take that away from her. SO FAR SO GOOD with the afternoon class. She is a little more grumpy than I would like but I'm hoping she will get more used to the hours and everything will even out!



Her first day as beautiful as can be :)


Avery, Makenzie, and Angie..best buds! 

Infusion 58, 8-1--13, Infusion 59, 8-14-13, Infusion 60 8-29-13 and Infusion 61, 9-11-13

Infusions, INFUSIONS and more infusions! It seems we would get used to this...but we don't. It still stresses me out and I still hate that she has this disease and that this is our only option BUT we do it because we have to just like every other person who has Pompe Disease. AND it is always better than the other option...SO thankful that Avery is in our lives and there is a drug that will save her life! All of her infusions have been smooth sailing except the last one on 9-11..it was a little rough. On 9-11 she had to get two pokes and there were lots of tears:( and for some reason it even hurt her when we took the tape off at the end. Let me just tell you this girl is so tough! I am so proud of her. We are also thankful for Chelsea! our amazing nurse!

Thursday, July 18, 2013

missing Chelsea

Avery loves Chelsea but...not necessarily all the time :) Avery talks about Chelsea when she is not here and can't wait to see her but when she gets here it is another story. So this is Avery telling me about missing Chelsea!

A new bike

Avery was ready for an upgrade..so off to Wal-Mart we went and she picked a Dora bike!
Happy as can be with her big girl bike



Summer fun!

We have had an amazing summer so far. Avery is able to do almost everything and it is amazing! Last year Avery was still pretty weak and we didn't feel like she was up for a constant on the go all the time lifestyle..so we didn't!
Mya and Avery on the 4th

Wade's sister, Anne, Jason, Knox and Marlow came for a visit

Avery tubing for the first time

Avery at the beach

Avery and Daddy getting ready to tube

on the boat

smore fun

at the beach

hot tub fun
Avery, Mya, Aidan and Helen

Chillin in the tube with Mya

Sprinkler time

A week off

We took a week off from therapy. The week of July 15-19..what a treat! WOW it has been amazing not to have to go. Don't get me wrong I know it is best for her and I wouldn't have it any other way but it does get exhausting. We went to Mom and Dad's cottage for a night and Ohio for a day. Avery did amazing. She was jumping off the boat at the cottage and swimming everywhere. And in OH she was such a big girl in her little floating tube just being as big and brave as ever. It was fun!
Floating all by herself on the deep end

Our road trip begins to the cottage

Avery and her cousin Keaton

Kahle and Avery eating Popsicles poolside

Big sister Mya in the middle, cousin Lillian and Avery

Road trip with shades, blankie  and Tink

Infusion 53, May 23,2013, Infusion 54, June 7, 2013, Infusion 55, June 20,2013, Infusion 56, July 2, 2013, Infusion 57, July 18, 2013

Infusions have been going great. Chelsea is amazing like always and always gets her IV with one poke!   Daddy was home for the June 7 infusion and I got a little break and had lunch with Kelly..aka Nolan's mom and Sagebrush! What a treat! Avery usually sleeps but didn't sleep on that day because her daddy was here! SHE LOVED having him here and didn't want anything to do with me:) I was ok with it!lol We still just watch movies and eat junk food for most of the time. She almost always takes a long nap which is great!

Thursday, May 16, 2013

Diagnosis day 2013

Two years, and look how much Avery has changed. This day two years ago our lives were turned upside down. I remember it like it was yesterday. Around 11am Wade called me with the news and I was devastated....Avery had/has Pompe and there was/is treatment but no cure. We had no idea what to expect and what to do. Now two years later our life is go, go, go and GO! We are so busy all the time. Avery now has infusions every other week at our home. We have an amazing nurse, Chelsea who comes and gives her this amazing, life saving drug. She wears leg braces to help her walk and WALKS! Two years ago she didn't do that. She has school therapy and in the summer does private therapy at Kids in Motion. We go to speech, occupational and physical M-Th.in the summer. She is currently in a drug trial for the drug Lumizyme so that adds extra to our schedule. We have to do blood draws once a month and overnight them to Genzyme(who does the study) and every six months she is evaluated at Detroit Children's Hospital. She gets an echo, and ekg, a full physical therapy exam, blood work and urine work. She is also examined by her genetic doctor, Doctor Stockton. He is a genius and we are thankful for him. 

Everyday I am thankful for medicine, the amazing family and friends we have that support us through this roller coaster life, and all the doctors and nurses that give, give and give. We have gained an amazing circle of "Pompe friends" through this journey and I don't know where I would be without them. I can ask them anything and they have an answer or a shoulder to lean on. My outlook on life has changed DRAMATICALLY! So many things that used to "matter" no longer do. I know now what does matter, and it is keeping Avery strong and healthy and staying close to the ones that support us and help us through. My number one priority is keeping my family happy and healthy. I have learned that it is ok to say no and that I can't always do everything. I am a giver and a do-er and want to give 110% all the time but I sometimes don't have the energy and that is ok. My mind is always on Avery and her well being. I try really hard to keep every thing else in balance especially with Big Sister Mya. I never want her to feel left out or neglected because I give so much to Avery. I'm hoping that Mya will realize with time it is what needs to be done and that I love her just as much. It makes me cry thinking about this :( I know that Pompe has changed our lives and I understand it..I am just not sure that Mya understands that it has changed her life too. I hope she understands one day. I do know that Mya loves Avery more than anything!

new braces

Edgar casting Avery for her new braces!



Avery getting her new braces on. She is getting so big and wanting to do it on her own. I am learning to be patient ..but it is difficult :) She chose purple and butterflies and really likes them!