Pulmonology, August 2012

We had an appointment with pulmonology this week. They moved to the new specialty building along with the infusion suite. The building is AMAZING! http://www.childrensdmc.org/SpecialtyCenter-Detroit.  Her appointment was quick. He was SUPER impressed with her improvement. He seemed a little hesitant about her going to school because of the germs. I explained to him she went to school a day a week last year and also goes to daycare once a week. His reply...do not hesitate to go to your pediatrician and get an antibiotic if needed as soon as you see symptoms. Our whole family should also have a flu shot before November. He told us to keep up the good work and he will see her in a year! WOHOOOO! LOVE appointments with good news! So after our appointment of course we had to stop and visit our infusion nurses. Karen, Aracely and Tenay(it is horrible but I don't know how to spell her name) were there. They were so happy to see us and Mya got to meet them for the first time. They were shocked at how Avery has grown and how great she looks! We didn't stay long as they were busy with patients so we raided the fridge and took off. Just kidding..but they did have yummy snacks and juice!

New braces are on the way!

We had our casting with Edgar this week and new braces are on the way. Probably about in 2 weeks we should have them. I let her pick the color this time which scared me. Some of them are SO ugly as if she doesn't get enough attention drawn to her by just wearing them! I have picked the lightest color for the past 3 pair..light pink. Well, she chose blue. Blue is her favorite color. It is not just a light blue thought..it is a little bit tie dyed kinda..not too bad. They could be worse. At one point she pointed to some blue ones with dancing bears on them..I vetoed that IMMEDIATELY! Sorry Avery! I want you to have a choice..just not that one! Can't wait to get the new ones. I'm sure they will be more comfortable for her as she is growing like a weed...a bad one on some days ;) She all of a sudden has pinchers! ...and they hurt!

Edgar and Avery 8/2012

she is ALWAYS so good with Edgar. She is even smiling!

Infusion 33, 8-16-12

Another great one for Miss A! She is staring to get a little restless right before we start the IV, when I'm holding her and Chelsea is getting ready to go. We used to let her play with my phone and watch a video or something and now she wants nothing to do with it. Thankfully Chelsea rocks at getting it on the first try! Today's IV came out a little and Chelsea managed to get it back in without poking her again..close one! Avery ate like a champ like always during infusion. Before noon she had a donut, milk, water, chips, 2 pieces of pb toast and a banana and still wanted pizza! HAHA! That's my girl! We waited on the pizza til after a short 1 hr nap! Again, the worst part was getting the tape off...she just screams and big tears fall down her face..it crushes me. :(  The infusion seems to go by so fast..like we are forgetting to do something? or..I don't know?..it is over before we know it. We were just so used to the hospital setting and waiting FOREVER..and that is no longer! :) We started to work out a fall schedule but it is a little complicated because Avery will be in school on Thursdays. We want to switch back to our normal Friday but we can only do that every other time because we have to FedEx blood overnight and they don't do weekends. So summed up..we will have to do something besides a Friday every other time at least until this trial is over! I'm not complaining..trust me! This home infusion stuff is amazing. Although we miss our friends at Children's Hospital! http://www.childrensdmc.org/

what a difference

A visit with Dr. Dabrowski this week made Momma really happy! The second he walked in the room he said.."what a difference." He noticed that the usual open mouth in Avery and most Pompe patients, has improved dramatically. And when he lifted her under the arms he noticed more resistance than usual. She had less sway in her back(her belly is not sticking out as much to balance herself) and her legs are closer together when she walks. She used to walk like a linebacker! She also has less sway in her shoulders. He just really couldn't believe her improvement. HAPPINESS! He also noticed how tall she has grown in the past 6 month(approx) her current AFOs(braces) are way too short now. He wants to get her in a new set of AFOs as soon as possible. He made the choice to keep her in taller braces instead of going to shorter ones. One of the things he did was check her foot reflexes. He tickled her foot and where most toddlers would curl their toes into an upright position Avery dodged the tickle, moving her foot to the side and around and tried to get the foot away from him. He said that many doctors would put her right into some shorter SMOs(braces) but he thinks taller ones are best for her and any "damage" that would be caused by keeping her in tall braces would be easier to correct than damage made from putting her in shorter braces(damage to her body, legs, hips, walk etc)that makes sense to me. She has plenty of time to be in shorter braces. He wants to keep her in therapy..as much as possible and keep her swimming as much as possible. He said that we are doing an amazing job!! It is so nice to hear from an outside source. We work really hard to keep her on her toes so to speak. We will do anything and everything to get/keep her strong. If we give up..so will she..and THAT IS NOT AN OPTION! Avery will be getting casted for her new braces on Tuesday and hopefully have them in two weeks. Edgar(Wright and Filippis) added some extensions to her current braces so her toes don't hang over...that should get us through the next couple of weeks. Then it is off to shoe shop for something that will fit over the braces. THE WORST PART! Good fitting shoes seems just about impossible and are a little on the pricey side...but..whatcha gonna do!?!?! Our next appt. with Dabrowski will be in December.

Infusion 32, 8/2/12

Today was a good day. It has been going by so fast. Avery had a few tears with the poke but was over it in a second. She took about an hour nap in her crib which made a HUGE difference! She was a little grumpy! We did our usual snack eating and movie watching. I said that next time I want to plan some projects/events to keep us busy. We were kinda bored! Chelsea and I were about to fall asleep!