9-27-11...Off to a good start!

Just last week Avery took two steps with Shawn....today...6! WOW! Way to go! What an improvement! Shawn really pushes her, which is great. I peeked back in the therapy room today to watch and Shawn put 2 stickers for Avery on a rolling seat/stool and kept pushing it further away! Well, if you've read any of these posts you know how obsessed Avery is with stickers..and how she thinks she MUST have one every therapy session! So she was wobble walking towards them and realized she was doing it and dropped to the floor. We are so proud of her. I can't believe 4 months ago she couldn't even stand...now she is taking steps on her own.  It is unbelievable to me what therapy and medicine can do.  Lets not EVER complain about the cost of drugs...you never know when you will need them to save your life!! ~ A MIRACLE~

Week of 9-19-2011

Our little dance party tonight to Halloween music! 

Good News!!!!!!!!!!!!!!!! Little Miss Avery took 2 steps all by herself at PT with Shawn on Tuesday! Holy smokes! She is so determined. Shawn had her holding things in her hands so she couldn't hold Shawn's hands. Shawn said she took the steps, looked around and realized she was doing it on her own, and then dropped to the floor! Little stinker! She can do it but it is a little scared. Which is understandable! This is all so new for her. She has been just cruising around with her walker more and more this week. And just so active all the time. I'm even more exhausted now! because I still need to carry her and move her sometimes on top of her being into everything and reaching everything! AHHHH. BUT not complaining! I wouldn't have it any other way! WE are so proud of her. Mya is really enjoying Avery being able to move and talk  so much. The therapists at Early On were impressed at how great they play together. Which for the most part, they really do! We did some dancing tonight and the girls are getting on and off furniture, and getting up to the table to color and play play doh and just little things like that! Really NEAT! They carry on conversations all the time. I will hear them talking in the back seat while driving..and I'm just cracking up! I love them so much! I feel like Mya is finally figuring out more of what is going on and is happy about it! Avery is Mya's little puppy for most of the day. Follows her everywhere and does EVERYTHING Mya does....INCLUDING THE NAUGHTY. But it is really exciting to see Avery learn at such a fast pace...she catches on to everything so fast and does not miss a beat! Good for her! I feel like things are getting more "normal" for us now. Feeling really good about everything!

Early On PT

Last week was our evaluation for Early On. Early On is a free program through the Oakland Co. schools. Avery qualifies for PT, OT, and ST. This is just about perfect timing because our 40 visits of each therapy through our insurance are up in October. So that would be over 2 months with no therapy...but we will for sure take advantage of this school program. We will start back at Kids in Motion in January!
I was not sure what to expect..but was really impressed. The room that we will be doing actual PT and OT in is inside the Holly Elementary. Perfect..right down the hall from Mya's preschool classroom! It was super clean and neat and the therapists were SO nice! What a relief. I guess I  thought since it was a" free" program it wouldn't be as great as KIM. Dumb thought I know...(most)public schools are great and we pay taxes too.  I am sure it will be great! It just won't be as much therapy as we are used to. I had to do stacks of  paperwork and she had to be enrolled in school(it will save us some time later when it comes preschool time!) So we had to get immunizations and I am working on getting prescriptions for the therapy.  I met with Suzanne(head of the program in Holly) again this past Tuesday and Avery starts Thursday! For now our schedule will be Monday at Davisburg Elementary. This will be a group therapy for Avery to interact with other kids. I'm kinda bummed about it being in Davisburg. It is probably only 15 min away but I was SOO looking forward to being close to home. Holly El is 2 blocks away. Oh well, whatever is best for Miss A! On Thursday OT and PT and ST will be divided up within an hour. Not what we are used to at all but not complaining! We have to be there at 11. Again, perfect! Mya gets done with preschool at 1130 so she  can come play with us in the therapy room until we finish at noon! Saves me some trips! All is all, I feel really good about Early on. I'm excited for a change for a couple months! I'm hoping we can continue this program through the school year along with Kids In Motion. We are gonna get this girl MOVING!

The rest of Infusion # 9

Wade said the day went ok. She had to get poked twice..but only because she moved. Karen wasn't there..our least favorite person was. But Wade said she did a good job this time. The hand that the IV didn't take in is really bruised. I hope it looks worse than it feels. I asked Wade if she screamed while and before getting the IV and he said no, not really! We both wondered if it was because I wasn't there? Who knows?! Another Infusion under Avery's belt...Great Job!!

Infusion day #9. 9-16-11

Wade talked me into not going to infusion today. He says I should take advantage of it while he has vacation and that I go to appts. everyday without him. This is the first infusion I've missed, better yet..the first anything /appt. I've missed.  This is my "job" while Wade is working...so I just do it all the time.I would never go to infusion alone(if possible) and he said he will be fine.Who am I kidding he is so much stronger than I am!  He is right, it is nice to not go..but on the other hand I feel sooooo guilty(in which he replies...you gotta get over the guilt) When he does take the day off we go to infusion together. UGH..I can see myself driving down there later. I told him to call or text me every single second. Fingers crossed that Karen is there and they get the IV on the first try! Also..Miss A didn't point to her arm and say "ouchie" this morning.  Instead she pointed at her ear and said it! NOT sure what that means? Hopefully not ear problems already...after our good report at the ENT just over a week ago. Hopefully I get a full report from Daddy and I can fill you in later. Until then....

9-9-11

We had an ENT, Ear, Nose and Throat appointment today. We brought Avery's walker with us so she could practice. She got out of the car and was standing by her walker pointing at her arm saying "ouchie" :( It literally breaks my heart. She thought we were going to get a poke. On the brighter side she walked all over that day. From the car to the office and all over the waiting room. She stood/walked for over 20 minutes straight. WAY TO GO MISS A! We were expecting that Avery would have to get tubes in her ears and that we would be setting  a date to do so.  NOPE!!! She has no fluid in her ears and can hear great(well when she chooses to!) Good NEWS! She has had fluid in her left ear since birth and now it's gone.  I have no idea why but I don't care why either! So we will talk to Dr. Stockton on Friday to see about the port. We were gonna try to do both at the same time. Maybe we can hold off on the port and just have Karen do her IV every time :) A huge relief not having to get those tubes put in...or put her under to do it.  I was/am realllllllyyyy nervous about that. I just want her to be strong enough when and if the time comes to go under anesthesia.

Infusion #8 9-2-11

Infusion day #8. We got up at our usual time 6am and woke Avery up at 6:30a.  I sat her down at the kitchen table for breakfast and she pointed at her arm and said "ouchie." Wade and I just looked at each other......she knew...she knew it was infusion day. It completely broke our hearts.  She finally understands what is coming, what the day will bring, and how it will feel. I would do ANYTHING to take that feeling away from her. It makes me sick to my stomach. What can you do? There is no choice here.  We must do these infusions to save her life.
The day continued on like normal. An hour drive that usually Avery and Mommy sleep.  This time we didn't. It was a quiet ride. At one moment I looked back at Avery and she was looking at her left leg.....trying to pick hair from her leg. She realized she had leg hair for the first time...and I watched every second of it. It was really neat. Sounds silly I know.  But I loved it!
We got to the hospital at the normal time and upstairs to the infusion room. We always have to wait, wait, and wait for the drug. Ugh..gets annoying..but out of our control. I was so dreading Avery having to get her IV in. But when we walked in our favorite RN was there, Karen. WHAT A RELIEF! She always gets her IV on the first try.....no different this time, she got it on the first try! You think we would all be happy, not exactly right. Since Miss Avery now knows what is coming she immediately started to scream when Karen sat down to do the IV. Wade was holding her which I prefer. For some reason it is easier for me to watch and not have to hold her down. She now has to be held by a couple people...her legs and arms and the shoulder that is getting the IV. All this while she is crying and screaming.  It is a nightmare. I feel like I hold my breath the whole time....along with an extremely sick feeling. So the IV is in and we are still waiting for the meds from the pharmacy. It wasn't until 10ish that we got started. The actual infusion went great and really quick! We were out of there by 2ish and home by 3! Nice. 8 down and the rest of her life to go :(
Enough with the "negative"  ....Avery is doing amazing. She is moving everywhere. She stands so much...mostly holding onto furniture. She is hitting the terrible 2's, and fast! She screams when she doesn't get her way, says "no" constantly and throws her food and plates all the time.  I think it is great!.....when I'm not pulling my hair out. :) How lucky are we to have this little girl who is surviving this and is leading a somewhat normal life. Not one day goes by that I do not thank my lucky stars for her life. I try to live everyday..day by day and enjoy every single second.  That is why the leg hair was so neat to me. She is getting stronger by the day and so is the whole Meyer/Nagelkirk family. Mya continues to cheer Avery on and will be the first to say "Mommy we are so proud of her..aren't we Mommy." Mya says that everyday at least once. We have noticed Mya acting out a little more that normal...especially since Avery started using her walker more. We are trying to deal with it..but it is really hard and frustrating.  We want to make sure she knows how important she is in Avery and our lives. We refuse to give up, settle for anything but OUR best, and hope more than ever there will be a miracle drug that would help Avery even more. My family comes first and  I refuse to let ANYTHING get in the way!  I've said it before...We will not give up! Especially Miss Avery Kay!