Pic line time

With the news of Immunosuppression starting we needed to do something fast for all these treatments coming up. We decided a PIC line was the way to go. Avery was getting all meds through IV up until now... we are starting with Oncology on 5-4-15..so in 3 days. She would have to be put under for placement of the line and like always that stresses us out. Avery was a champ and did fantastic and we are all set to go in 3 days! There are negative and positives with a pic line instead of a port(which at some point she will have)A pic line can't get wet, needs to have weekly dressing changes and needs to be flushed daily which we would be in charge of. Heading into summer our biggest worry was keeping it dry(no swimming etc. ) We became nurses overnight and caught on rather quickly. The dressing changes however did not go smoothly so we insisted on a nursing company to come to our house and change it weekly.

getting ready to go under

showing us where the line will be

after eating her purple popsicle

there it is! Purple means power!

Oncology...the start of it all

Oncology was a whole new world for us. I never dreamed we would be seeing the walls of the Oncology floor along with the several others that we already see. Oncology because of the drugs that go along with the suppression. Dr. Stockton is not familiar with these and Oncology uses these often. After all this immunosuppression is basically Chemotherapy just a different protocol than normal cancer chemo. Ours would be drawn out for several month but mainly the same drugs used during chemo. She would be getting Velcade, Methotrexate, Rituximab and IVIG this along with her bi-weekly infusion of Lumizyme. Starting chemo meant no more school and no more dance because of germs and here weakened immune system. She would be put on a running antibiotic of Bactrim( every M,W,F for the duration)This all was sickening for us! OMG Just when I thought things couldn't get worse...here we are sitting in the oncology waiting room and all three of us had no idea what we were about to go through.

waiting in the waiting room

psycho about gloves

read these and tell me you don't have a huge knot in your throat.

painting and passing time

dressing change time

no school letter

our protocol for the next few months

Eye and Pulmonary appts. 4-29-15

Time for more check-ups...and why not do two at once to save a trip. First up eyes with Dr. Roarty. He is amazing with her! She is maintaining and has a little near nearsightedness in her right? eye but nothing he is worried about. She will possibly need glasses once school becomes more demanding...but for now all is healthy and well.
Pulmonology checked out great too. They checked her breathing and Dr. Abdulhamid..also amazing..noticed right away that she has slight scoliosis which I thought was so amazing. These doctors are brilliant and are just special people! We are so fortunate! Breathing is fine and no worries there. Both appts scheduled in about a year!

med student checking her eyes

med student checking her eyes

stealing gloves...surprise

what gloves?

123 breathe....

what a trooper

Kindergarten Round up 4-20-15

Here we go...here comes Kindergarten! WHAT and WHEN did this happen?!?!?! She was as big and brave as ever! Wade and I took her and she went with someone to get evaluated and she did great! Smarty pants! She is beyond ready....and Mommy is not :(

cardiology 4-17-15

Avery had her follow up yearly visit with the cardiologist(a new one). EKG and Echo were done and both are NORMAL! Her heart was enlarged with the original diagnosis..with treatment it is back to normal and maintaining! Doc said there is no evidence she even has Pompe by looking at her heart. Speaking of hearts..mine hit the floor when I heard that news! Amazing!  It is always a little nerve racking sitting there wondering and hoping everything is ok.

posing with a perfect heart, attitude and her new stroller!

new wheels 4-13-15

new wheels just arrived! LIFE CHANGER!! It's red, big and beautiful....the Kimba Kruze by Ottobok. This stroller was covered by insurance and took forever to get but it was worth every single second of waiting. It's equipped with things to even secure it in a bus if we needed to and will grow with her for several years. I do want to get a sun shade to go with it but that will come with time! .....and it fits like a glove into the back on the mini

delivery and adjustments

beautiful

getting in on her own

perfect

like a glove!!

Chelsea's baby shower 4-11-15

Avery's first home nurse, Chelsea had her baby shower on Saturday. We were all super excited to see Chelsea and we headed two hours north for the shower! It was a lovely shower and Chelsea looked amaz! We are so lucky to have met such an amazing person! Our current nurse, Cortney was there along with her son Hudson. After the shower we hit up #RL690...the old stomping grounds and ran into my dear friend Marcie. We followed lunch up with bring your own container slurpees:) and then a quick stop at my mom and dads. FUN DAY!

Avery, Chelsea(baby Hazel in her belly)Cortney and Mya

Avery and Hudson

Slurpees

Chillin and G and G Meyer's house