Infusion # 50, April 11, 2013,/ #51, April 25, 2013,/ #52, May 8, 2013

Wow, I'm behind. 3 more infusions under our belts...I say that like there is an end in sight..but I  know there is not. :( Hoping every single day there will be. Avery has been doing amazing. Especially on #52, barely any tears and such a big girl. I am mom of the year and let her eat whatever she wants and she chooses junk of course! She has been taking nice long naps during the infusions and it is really nice. I sometimes get a little snooze in too. For whatever reason, infusion days suck the life right out of me. I still can't figure out why. They go really smooth and they are pretty low stress. I guess it is the whole situation..I don't know. When I do figure it out you will be the first to know.

strep, UTI and a VCUG, YUCK!

Avery had a really high fever a couple weeks ago. It started on Friday/Saturday and by Monday we were taking her to the Dr. It was up to 102.5 at times. We just rotated Tylenol and Ibuprofen for the weekend. Looking back we should have called the Dr and took her in immediately but we just thought we would give it a day or two. Dr. Haddad our pediatrician will see us on the weekends if needed. Anyway come Monday she was miserably sick and she tested positive for strep and another UTI(Urinary tract infection) This is her 3rd UTI with a high fever. The second one she had she was hospitalized for 3 days it was so severe. Our Dr. recommended we get a VCUG done.  http://www.childrensnational.org/files/PDF/DepartmentsAndPrograms/Radiology/VCUG.pdf 

The VCUG was a NIGHTMARE!! Wade took the day off so we could both take her to Children's to get the procedure done. They asked us if we wanted to strap her to a board and we said no we thought she would be fine. WELL,,,,, not so much. We had to hold her arms up so she wouldn't touch the area. She was screaming in pain and crying so hard her hair was wet on the sides(she was laying on her back) The point is to fill her bladder with fluid then have her urinate on a bed pad/diaper thing. Well, again,..we are potty training her an she didn't want to just pee unless it was on a potty..so she wouldn't go. Finally the nurse had an idea to put a plastic potty under her and she finally went. YIKES! Wouldn't wish that upon my worst enemy! She was a little sore the night after it and the next day a little. I guess it was just the fact that we had to hold her down and hold her still..it was sickening to me! We don't have the results yet...but at the time they didn't see any real issues. So the next question is..why is she getting these UTIs?!

Infusion 49, 3/28/13

Infusion 49 was a blood draw. The only thing different is Chelsea takes extra blood and puts it in different containers..or whatever they are called and sends it to Genzyme for the study she is in. These infusions have to be done on a day other that Friday as the blood in overnight-ed by FedEx. There were lots of tears again but she gets through it..it just makes me really sad. Avery took an extra long nap and it was for sure needed! All in all it went ok and we are onto infusion number 50 in two weeks!

Dr. Dabrowski appointment

Dr. Dabrowski is her physical medicine doctor and he is amazing, we love him. He prescribes her braces and PT, OT and ST and anything else we can think of. He can tell how she is doing by just watching her walk. We had our appt. on Monday, March 11, 2013. He noticed right away how tall she is and that she will need new braces for her legs. Her sway in her back is better which means her torso is getting stronger and she doesn't have to stick out her belly as much to balance etc. Her feet and legs seemed really tight and he wants us to do stretches with her. He recommends doing them after a warm bath for up to an hour at a 20 count each leg rotating...if that makes sense?! He also thinks the hot tub will be beneficial to her muscles so we will reduce the temp on that a little and get her in that as soon as it warms up a little. We have her casting for new braces on Thursday. We also noticed her right leg and foot are turning in more than they should be so we will be getting a wrap for that. It will help turn it out the other direction towards the way it is supposed to be. We will also be getting a hip x-ray done to make sure everything is developing the way it should be. So all in all..not the great news like we usually hear but not bad either..we always know it could be worse!

ABC

What a good little singer. She loves to sing and sings herself to sleep most nights! 

Riding her bike

Miss Avery riding her bike. She could not do this last summer. She is getting so strong and can now push the pedals on her own!!

Infusion 46, 2-15-13, Infusion 47, 2-28-13 and Infusion 48 3-15-13

1 Poke on all these infusions. Lots of tears and fighting it though :( She now runs from me when I tell her it is time for infusion. She also has been asking more about it throughout the weeks and dreads it I think. I feel so bad for her and it is really hard to explain to her why she needs it. I will continue to tell her what I have been telling her...that she needs it to play and walk and be a big girl. I think that is all her little mind can understand at this time. Today and most days she lays in front of the tv and watches whatever she wants and she eats whatever she wants too...lol! And that is just the way it is gonna be! She makes friends with Chelsea about half way through the infusion and starts to look at pictures of her nephews and play with her. But that is always on Avery's terms and when she is ready...and Chelsea understands. And Avery is always willing to give goodbye hugs when it is over. She has her own love/hate relationship Chelsea. Chelsea agrees...that is the truth. Thankfully Chelsea does understand and keeps coming back :)