Infusion #14,11.25.11

Black Friday....Shopping for most, infusion for Avery. Wade took Avery because I was still sick and home in bed! He said it went great. One poke! Wade said she wanted to just walk and walk..everywhere. The battery kept dying on her IV thing :) It went really fast and they were home by a little before 3! Another one under her belt! Avery is just getting so strong! She walks everywhere without a walker. She is bruised from head to toe from falling, but it doesn't slow her down! When she falls...she gets right back up and keeps going. She tries to walk so fast and just wipes out all the time. She WILL keep up with Mya..in no time at all! SHE IS SO DETERMINED!!

candy time..and some walking too!

Sunny day, Sweepin' the clouds away!

Sesame Street Live! With Daddy, Mommy, Mya, Avery, Jill, Brent, and Maggie! We all loved it! It was an amazing show! It was the second time seeing the show for Mya but a first for Avery. The look on Avery's face was PRICELESS!! She loved it and I think Mya loved it even more!

Ready to go to the show!

Glued to the stage!

Miss Mya and her new Big Bird!

Intermission! Popcorn!

Maggie..glued to the stage!

Catching the streamers!

Walking with Daddy!

The Meyer/Nagelkirk Family

Besties!

Maggie and Avery!

I love cupcakes.....especially this little one!!!

                                      This makes it all worth it....Avery is going trick or treating!!

                                                               Mya the nice witch!

Lillian the princess and Mya the witch!

Keaton our little parrot!

Avery got to walk to a door and say trick or treat! amazing!

I go out walkin'...after midnight!

We sing that Patsy Cline song on a daily basis! Little Miss Avery is just walking everywhere....and falling everywhere too! That is ok though! She is getting brave enough to walk on her own. She is getting the courage to leave the side of the couch or chair and walk to the middle of the room! Great job! She will walk a little, wobble a little, catch her balance and continue on! AMAZING! She follows Mya all over! Mya and Avery will walk around holding hands like little besties! It is the cutest thing. I can just see it in Avery's eyes...she has wanted to walk by Mya's side for months now..and can finally do it! It makes Avery so happy to be able to do most of the things Mya can do! I am so proud of both of my girls! Listen to some Patsy!!! We always do! Here is the link to listen!!!
http://www.youtube.com/watch?v=bsRNCvHXHHU

Infusion #13, 11.11.11

We are halfway there! Halfway to being able to do the infusions at home! We have to do the infusions for at least a year in a hospital setting then we can do them at home...If insurance gives us the go ahead. Fingers crossed for that!! Aunt Sarah went with us to this infusion. It went really good. Karen did the IV and got it on the 2nd try. But Avery did great with it. She cried of course but it didn't seem to be as bad as usual. We got out of the hospital at a record time...before 2! Avery was really good and didn't seem to get too bored. All in all...a good trip! Thanks again Aunt Sar!

Infusion #12 10/28/11

Last Friday was a good one! Mommy and Daddy got to go this time! Avery did fantastic. One poke! The only negative was the meds took forever to get there again. What can you do but wait!? We were still outta there by a little after 2!

Avery, now a runner?

Well, not quite yet but she is just about one with her walker! She is attached to the walker. Great thing! Today at school therapy she walked the whole hallway to the classroom with it, around the room most of the time, and then out to the car. Did I mention it was raining on our way to the car, and we were getting drenched so I tried to pick her up.  NOT happening...she just kept saying walker, walker walker. OK, how do I argue with that? I don't!  I get soaked! Not a problem :) The things you do for your kids! I am very proud of her and I am trying to be sooo patient. She still runs into things and is slow at times. PATIENCE MOM! You all know me...lets just say I do not have the patience of a saint! Maybe I will by the time she doesn't  need the walker! Mya is such a big helper and is so proud to tell everyone that her sister needs a walker and is getting better at it. You should hear Mya bragging Avery up to the Early on teachers. Proud Mommy.
Off the subject..kinda. Don't know if I mentioned it, but the Thursday before Avery's birthday party I heard Mya talking. Her preshool class walks by the early on classroom on the way in from outside. I walked out of the classroom to go get Mya from preschool right behind the whole class. Mya didn't know I was there.  I heard Mya telling Ms. Sarah that "her little sister Avery is turning 2 and is having an Elmo party" Mya even talks about Avery when I'm not around(Or at least she thinks I'm not around) HAPPY! The love between sisters!

Week of October 17, 2011

Another busy week for the Meyer/ Nagelkirk family. With therapy and school I am a full time taxi :) 5 months ago I had no place to go and nothing to do. WOW that has changed to say the least. Tuesday Avery had PT with Shawn. This was our last appointment with Shawn for the year, our PT visits are up with Insurance and their 6 month policy expires too. When I got there Shawn pulled me into the back to talk. I figured she wanted to update me on Avery and give me a plan for the few months that we would not be seeing her. Well, not the case. Shawn's last day with Kids in Motion is next Tuesday, the 25th of October. She is going to medical school and got accepted for next year. She will take some time off to be with her family before she leaves to go to the Caribbean for school. I was SHOCKED! I immediately started to cry. You have no idea how much this single person has changed Avery's life..as well as my whole family's. I just assumed She would be Avery's therapist forever. :( I am so happy that she is pursuing her dream! but am soooo bummed at the same time. She said it is so bittersweet and loves her job and loves our family so much too. She said she is going to school to be "Dr. Dabrowski."  Dr. Dabrowski is Avery's Physiatrist! Good for her. She has been taking classes and working towards this goal for a long time. So where does that leave us? Mary the owner will be working with Avery until they replace Shawn.  But really, I don't think anyone will ever compare! What a feeling. I'm sure over the course of the years ahead several people will come in and out of our lives. But I wasn't ready for it. Note to self...don't get attached to the people that care for your child?! RIGHT,!? Easier said than done. We see Shawn more than I see my immediate family and friends. That is just how it has to be at this point in our lives. So Tuesday, her last day we will go in and say goodbye to her and thank her for ...being so great! We are gonna miss her! I hope one day she will be Avery's physiatrist! I HOPE!

Infusion # 11 10-14-11

Infusion Friday. A day I NEVER look forward to. When it is infusion week, the whole week feels different to me. And non infusion weeks....I feel like I am a happier person. Besides the fact that Avery has to go through all this...every other week..forever; I don't know why I have this feeling. It literally makes me sick to my stomach when I think about Infusion. I can't get used to this. Everyone keeps telling me: it will get easier, become a routine, it is harder on you than it is on Avery. That is all well and fine but..but how do I change how I feel? That is my baby, our baby. And not a single second goes by that I don't wish...WISH it was me instead of her. When Avery points at her arm every single day and says ouchie..I wanna cry....and many times I do. I feel like after 11 times of her going through this I would/should feel different..nope! I don't. I dread every time like it is the first time. With that being said, Lorraine, Avery and Mommy were off to Detroit. A "normal" infusion day. We got there on time, checked in without a hitch, and were upstairs and ready to go. Karen, our favorite nurse was there and that immediately takes about 1000 pounds off my shoulders. She gets the IV on the first try, and today was no different. Avery did amazing, like always. I mean what 2 yr old goes through all of this and still has it in her to smile and play while she is there? My big girl Avery does. She did fall asleep this time which makes it so much easier too, for her, Mommy and Grandma. The time seemed to fly by and we were out of there around 2 and home by about 3.

Avery Kay turns 2! Time to celebrate with ELMO!

What an amazing day! Miss Avery turned 2 on October 8, 2011! We decided to celebrate...BIG, and with who else but...ELMO!! Wade and I usually do not do "big" parties for the girls...but this situation seemed different to me. I wanted to celebrate Avery's life! Celebrate the fact that we have all "made it" to where we are today! It has been a really long 5 months! We had amazing weather and a great turnout. Lots of family and friends to celebrate with! We had pizza, bread sticks, salads, cake, cupcakes and cookies! Avery has so many people that love her so much and that support our family every day, and we are so thankful. Avery received so many wonderful gifts. Miss Mya and Avery...love everything so much! Lots of Elmo, and we all know that is her favorite! We rented a bounce house..and it was a huge hit! We also had a pinata ...which we are still eating candy from! Overall,....PERFECT! And we cannot thank everyone enough!

The Birthday Girl playing with bubbles!

Yummy Sugar Cookies!

I just had to make an Elmo cake!

Goody bags

more cookies

all the yummy treats

cupcakes with Sesame Street rings

Sponge Bob bounce house

The party just getting started

big girl walking with Daddy!

FUN FUN! Presents!

Blowing out the candle

Cake Time!

Evidence!

Present time

look at all the Elmo stuff!

Pull string pinata...perfect for little ones!

getting candy

pizza time

Big sis Mya and one of her besties, Keirsten!

Back to normal?

On Sunday, after her big birthday party, Avery woke up with a 102 fever and just screaming and crying. She carried on for a couple hours and I called Dr. Haddad, her pediatrician. He said to bring her in immediately. He met me at his office(yup Dr. Haddad will go into the office on Sunday, and her personally answers his phone, anytime any day)NOT a doubt..we are with the right pediatrician! He examined her and when he felt right below her ribs/side stomach area she screamed. Not a "I got my finger pinched..or fell down" scream, an ear piercing pain cry. I immediately lost it. I knew something was wrong. He mentioned a couple things it could be but couldn't be sure until we got tests done. We needed to get them done, and fast...so to the ER we went. They checked her out and guessed it was either a ruptured appendix(which would be rare in a 2 yr old)a urinary tract infection, or a kidney issue. Further tests would indicate it was a UTI. They started antibiotics right away and we got admitted to the hospital. Little did we know we would be staying there for 2 nights. She needed to be monitored for 48 hours. WHAT A NIGHTMARE. We got to our room and I ran home to take a shower and get a few things for our stay. When I returned, the medication had already kicked in and Avery was feeling better. By that night, Avery was pretty much back to normal. She was just REALLY tired and cranky. I stayed with her Sunday night and Wade stayed with her Monday night. Monday was a really long day. We had to keep her entertained ALL day. The hospital had a wagon..so we walked with her in that for hours! And the toy room was right next door to us, perfect. We also brought lots of toys and books! She barely took a nap..it was so light in there and loud. She is used to dark and quiet. Mandy came with the kids, and Dick and Lorraine brought Mya up to visit. I went to get some food with Mandy and that night when I came back to the hospital Avery was SOOOO over tired and cried/screamed for 2.5 hours before Wade finally got her to sleep. He said she later woke up and was up for most of the night. ugh. On my way to the hospital on Tuesday morning, I text Wade and asked him if he wanted anything from McDonald's for breakfast. His response, "unless they serve 8 hours of sleep, I'll have a coffee." I knew that the night must of have been a long one! Grandma and Grandpa had Mya and Charley for the couple of days and were over the top with helping out. Grandma visited Tuesday after dropping Mya off at school and rocked Avery and she slept for over and hour and a half...she needed it so bad. Lisa and Lexi came to visit us on Tuesday, and we got to go home at 2p. YES. All in all, Avery was pretty good, we survived, and I'm hoping that is the last trip to the ER forever!

10-2 through 10-8

What an exciting week for Avery. She walked 10 feet..by herself. She is getting so brave. She will go from sitting to standing(kinda) by herself and does a lot of monkey crawling(at least that is what I call it). Monkey crawling is when she has her feet on the floor is semi standing up but bends at the waist and puts her hands on the floor in front of her.(does that make sense)...in my mind it does! Her vocabulary is becoming huge. She is saying sentences now. Well maybe not complete sentences but I'll take it. Her favorite thing to say is...out ma ma! Out of the car seat, out of the grocery cart, out of the stroller....I get it she wants out! It makes me so happy she wants out ma ma because she wants to MOVE! I have had several people comment on how strong her speech is getting. Must be all the hard work her and Alisha are doing! The therapist also mentioned that developing speech goes hand in hand with walking. YES PLEASE! Avery also uses a different walker now. It has wheels on the front and back..and she is a reckless driver! I'm ok with it...but watch your toes because she will run em over! What a difference 5 months in therapy can make! Amazing! I'm thankful for my life! It was/has been really hard for me to say that lately..but I really am! I'm thankful for everything I get to watch her learn! I'm thankful she is teaching me something new everyday! I'm thankful we have the resources we have....meaning,... infusion, insurance, therapy...and most of all EVERYONE that supports Avery!

Infusion # 10

OK..so I'm a little over a week behind. Who's counting. Infusion 10..went pretty good! Lorraine went with me this time. We were unsure if we would be able to have the infusion on Friday...due to Avery being sick. She had croup and an ear infection. If she is running a fever or coughing she can't have the infusion. What would we do?? We would have just had to have 2 infusions on back to back weeks. I'm so thankful she woke up with no fever. When we got there Dr. Stockton was waiting for us...that never happens! It seemed like it took a while to get the meds..but then again it always does when you are trying to entertain a 2 yr old. Avery was really tired and I thought she would never go to sleep(because she never does) and over half way through she fell asleep :) She slept for over an hour! It was really nice. Jessica was the nurse who did the IV..and she got it on the first try. I held Avery and did a great job myself! Wade usually does the holding..but it really wasn't that bad. I think I did better holding her..than not! The infusion seemed to go pretty quick. We were home by 3! The infusions just wipe her out...and me too.  Only 16 more to go until we "hopefully" can do them at home! Really looking forward to that!

One of the best days of our lives!10*8*11

TIME TO CELEBRATE....Avery's LIFE! Wow, 2 years has flown by! At this time 2 years ago I was in recovery from a horrible c-section that delivered Avery. It's funny how people say you "forget" the delivery. I think that pertains to a normal delivery..but whatever...I will never forget. Anyway...what a quick 2 years. Our life has changed 2000000%  in 2 years. Holy smokes! Today I woke up and instantly thought of Avery and got tears in my eyes. I am so emotional! I doubt I will make it through the morning without tears. And when I see all my family and friends...I'm sure it will be worse. It is tears of joy of course. Tears of joy that Avery is with us on this special day. This little girl has been through way more than any little one should have to go through. I only hope it gets better for her in the years to come. When I think of the last 5 months..I get a pit in my stomach. What a nightmare. But,....yes I say but...there is some positive out of all this...Avery is doing great and is loving life! 5 months ago I had doubts she would crawl, walk, stand or even scoot around the way she does. Now, this week she walked 10 feet all by herself! WoW! We are so proud of her. She amazes us everyday and I'm sure she will continue to. Today I am thankful to have her, to be able to celebrate with a "healthy as can be" child. I'm thankful for drugs and for therapy(for her of course!)I'm thankful she has a healthy sister that loves her more than ever! I'm thankful for my husband, and for all of our family and friends that continue to support us everyday! I'M THANKFUL! Happy Birthday to my Elmo lovin, big girl!

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!

Avery Playing Babies

Avery played with this baby, wiping it, changing and feeding it for over 45 minutes.

Week of August 22

A good week for Avery...kinda. This was the first week that we only got to see Shawn once. Miss Avery chooses not to listen to her mommy and doesn't want to use her walker with me. The little stinker will sit right down behind it and say "NO"! Errrr! I'm hoping that Early On- the therapy through Oakland county schools, Holly Schools, will contact me this week. They said they would call me the last week in August to get Avery registered. We won't know til they evaluate her how much therapy she will get through Early On. Both Brian and Alisha said that Avery did good this week. Brian says she continues to do great at the obstacle course, and I think they did some kind of painting because her fingers were blue on Wednesday! Alisha loves her like always! She says that everyday she is getting more comfortable and is saying more and more! Avery is just amazing me EVERYDAY! She is trying more, saying more, and even becoming a little more naughty on a daily basis. Part of the problem....she tries to copy her big sister, and you probably know the attitude a 3 yr old has! Wow! Hoping for a "first try" infusion on Friday ...so she doesn't have to get poked 3 times.

8-19-11

Infusion #7. Today was a rough one. They had a hard time getting an IV started.  The meds were ready to go before Avery was. Jessica tried the first one and it didn't work. Lindsay tried twice and got it on the second try. :(  Avery screamed for an hour while they were trying to get the IV started. I was sick to my stomach. Needless to say, once the IV was started Avery fell asleep for about hour and a half or more. That was so nice.  Less time for us to find a way to entertain her. Avery is still complaining "Ouchie" ...so sad. We talked to Dr. Stockton and he thinks it is about time to put a port in.  We knew the time was gonna come...that doesn't mean we are exactly excited about it.  She has to be put under for that procedure. While they do the port she will get tubes in her ears and adenoids removed if needed. Dr. Stockton pointed us in the direction of an ENT at Children's.  I will contact them next week and make an appointment. In the meantime the doctors will try to coordinate to do everything at once. Our goal is to get the tubes in her ears before winter...cold and flu season. That means the port will be in before winter too.  All the nurses tell us how great a port is. Yeah, great for them to push drugs...but it is not their child getting it put in. It will be fine and be less painful for Avery in the long run. 

8-11-11 through 8-18-11

Last Thursday, 8-11, Avery got her new orthotics. They are pink and match her shoes great! :)They come up to just a little below the knee. She liked them right away. They helped her stand better on the first try! Edgar, who fit her with the orthotics was not happy at the size of the orthotics.  He felt they were cut to short in the toe area with no/little room for her to grow. They were also two different sizes when held side by side. He is having a new pair made for her...until then these will do. On Tuesday, 8-16, Shawn was walking with Avery, holding Avery's hands, and she said Avery was walking so much better.  She told me it was the best she ever walked at therapy...must be the magic orthotics! I was so happy! Thursday, 8-18-11, was a great day! We found out Wade got to keep his job..yes they were doing more cuts! What a relief...so stressful thinking of what would happen without his job and insurance. Done worrying about that.  Also, Miss Avery Kay walked all by herself with a walker..no assistance! Shawn said she told Avery to go find her walker.  Avery scooted over to the walker, pulled herself up, and started walking. AMAZING!  Seriously, not a dry eye in the place!  The person in the video working with Avery is Shawn. 

8-5-11

Infusion day #6.  Well, we survived. It was a long day. Grandma Lorraine went with us today, thanks! I feel like the day got off to a slow start.  I have no idea what the hold up is?? Linda, Avery's main nurse(Dr.Stockton's nurse) Says she orders the drugs before she comes over to examine Avery? Oh well, not much we can do about it.  The IV was put... in Avery's arm this time....normally fine but this time she was complaining "ouchies" but I just figured it was sore becasue...she has an IV in her arm. Shoulda listened to her because a couple hours into the infusion I noticed her arm was swelling..big time, right where the IV was.  It looked to me to be a little smaller than one half of a baseball? Maybe it just seemed that big to me. The nurse said the IV went Subq(subcutaneous)Meaning under the skn. So it came out of the vein...ouch. So fluid was going under the skin for who knows how long?! Poor baby. So they removed the IV right away.  The next question...should we put another one in? The machine said she had 40% left to go..but the bag didn't look like it had 40% in it.  They called Linda and she said we needed to do a new IV :(  becuse she wanted to get ALL the meds in Avery, including the meds in her IV line. I really don't think the nurses wanted to. They said it was up to me...I didn't have to poke her if I didn't want to. UGH! tough decision because it is bad enough to poke her once ...let alone twice adding more time to an already long day. And Avery was Grumpy and tired! But we did it....I wanted her to get every drop of "Muscle Juice" possible. And I also figured since these infusions cost upwards of 15 thousand dollars each time(so we've been told) I didn't want to waste a drop! She was fine..kinda. She cried so hard when they put the new IV in her hand.  I was sick to my stomach knowing I made the right choice to poke her again but holding her down while they did it. It didn't take long after the new IV. The infusion nurses figured there was about 25% of the meds left.  So I'm glad we made the choice to put in the new IV. Not to long after the new IV she fell asleep on Grandma's lap (only the second time she has ever slept there)It was a much needed nap.  Just when I think I have a grip( or am starting to get one) on this whole thing...I have to watch her go through getting two IVs. Here's to a great 7th infusion in a couple of weeks!

8-4-11

This week at therapy....She did great, of course!  After all weekend of saying..you're gonna walk for Shawn next week, right?  She cooperated with Shawn and did her walking. Brian also commented on how much she loves doing the obstacle course and does it for about a half hour out of an hour! Alisha just loves her more and more each week.  She says ...Avery is doing great.  Of course, Alisha gives Avery goldfish, so Avery will do anything for food!
Thursday was Avery's appt. with the physiatrist. Me, Avery and Shawn(her Physical Therapist)went. Dr. Dabrowski was awesome. He was super impressed with Avery. He expected her to be worse than she was/is. He thought she would be more wobbly than she was. He asked me if she could walk and I said no.  But did she prove me wrong...she walked with me in front of her holding her hands! AWESOME! It was real steps..not the usual stiff leg/knee steps. He also checked for reflexes and she had them!  HUGE DEAL.  Several doctors have spent several minutes trying to find a reflex in her legs and arms...and could never get a good one.  Dr. Dabrowski got a reflex in both legs and her right arm..and a slight one in her left arm.  What does this mean????.....THE ENZYME IS WORKING!  Let me say it again...the enzyme is working!  This Thursday was to date since we got the Pompe news, the best day of my life!!! More to come.......

7-28-11

Gonna sum up the week with one document..because I have been lazy and tired all week.  Brian(OT) said she does amazing at the obstacle course. She loves it. Avery however does not like his student he has working with him. She cries everytime she comes to get Avery. Last time she clung onto Brian...(who up until about a month or two ago she cried wh...en he picked her up)when Brian tried to hand her off to her..  Avery is NOT good with strangers at all. The only thing I can think is that she meets so many different people on a daily basis that she doesn't know who to trust. Avery has been great for Alisha(ST) all week. Alisha just eats her up! Avery said night night Alisha in our night time ritual of saying goodnight to the whole world. So cute! Avery really likes her..maybe becasue she gives Avery Goldfish crackers...who knows, who cares....she is talking.  Alisha reviewed her hearing test and records that the ENT doctor has made on Avery since birth and the minute she read Avery was to have her adenoids removed and tubes put in her ears...she said by the sound of her voice...she would agree. Alisha was anxious to get the records from the ENT for awhile now. I let Alisha know that those things are on hold at this point.  We need to get her heart condition under control before we put her under for anything. This minor surgery turns into something major when it involves Pompe. We originally were gonna do the ears and stuff when Avery got a port put in..but Dr. Stockton would like to wait on that as long as possible. Bottom line, we don't want to risk her life if we don't need to...I would rather have a child with speech and hearing problems than no child at all. SO we will mention ears and adenoids to Dr. Stockton next Friday and see what his current thoughts are on this.
As for PT...Avery has been a stinker lately. Shawn said she will crawl til the cows come home..but will not walk. She came home today without a sticker...I assume it is becasue she refused to walk over to get one. They said she will take one or two step and be done.  UGH! Shawn said this is normal and that she  has a few other tricks up her sleeve to get Avery moving....I will trust her on that! Shawn also reminded me that she will meet us at Avery's physiatrist appt. next Thurs.  I asked her why she wanted to go(in a nice way ;))...and she said becasue I have questions for im regarding Avery and I want to meet him.  How many physical therapists do you know that would do this....yeah me too..none! I love her her! I am so thankful to have Kids in Motion in our lives.
 I also want to give a special thanks to G and G Nagelkirk.  They are WAY over the top..especially since we got the Pompe news on Avery.  They pick up Mya EVERYDAY so she won't have to sit there with me while I wait for Avery. And on days when we get to their house and it is lunch time, Grandma has lunch ready! They bend over backwards for us on a daily basis...and we appreciate it so much. We are so lucky to have them in our lives.  Even the KIM staff say how nice it is and how lucky we are.....don't worry...we know!

7-22-11

Infusion #5...and no they are not getting easier for Mom...but I think Avery is getting more relaxed about it. We got there at our normal time..8a and were registered and upstairs to the infusion room by 815....only to wait about 2 hrs for the meds to arrive!  AHHHHHH. The thing is..we have to be there and Avery has to be weighed(to know how much m...yozyme to give her..it goes by weight) in order for them to order the drug. And for whatever reason it took the nurses forever to get the show on the road.  At any rate we were outta there by 2ish and home by 3. Wade and I caught a quick nap while Miss Avery Kay snoozed for about 3 hrs.
The infusion went ok. There was a new nurse that neither Wade or I were over impressed with....and when someone kinda rubs you the wrong way from the word go....well you know the rest! She did Avery's IV and didn't get it the first time. UGH! Avery was so great for the first one...only one big tear rolled down her cheek.  She holds it in like such a big girl. So it could just be coincidence that the first one didn't work or operator error. I think if one of the regulars would have done it..it woulda worked! So second try..she got it, but not without tears and lots of crying. So Wade held her while I watched and held in my tears :( The rest of the day went fine. We just try to keep her entertained and fed :) Really looking forward to when we can do the infusions at home!  That would be beyond AWESOME! Avery is doing great with LOTS of pulling herself up and crawling.  I can't even believe the progress she is making.  And it even makes me more happy when her big sis Mya is cheering her on.  Mya says..Mom, we are so proud of Avery..right mom! I love them to pieces. 

7-21-11

OT with Brian. Speech with Alisha. Brain said she is doing amazing. She just keeps doing more and more with less help.  He also said that several therapist have commented on Averys progress.  They can't believe how far she has come since day one! That is exciting.
Alisha LOVES Avery so much! She tells me that everytime. She is doing great recogniz...ing and pointing out things. And putting 2 words together. Avery and Alisha colored some pictures together and they traced their hands. Avery was so proud to show me thie pictures!

7-19-11

PT with Shawn today.  Did I mention that Shawn got recognized in one of Detroit's Magazines as the areas best Physical Therapist(or something along the line of that) WOW! That is great to walk in to Kids in Motion and see that certificate!  How lucky are we to have her working with Avery!!
Avery didn't have a great day today. Shawn said she wouldn...'t cooperate very much at all.  People ALWAYS say that red heads have tempers...THEY ARE RIGHT! She has a little attitude..and she is NOT going to do something she doesn't want to do! So Shawn told her to walk over to get a sticker(with assistance of course) and she refused!  What a STINKER! So she got no sticker! You should've heard her bitch me out the whole way to Grandma and Grandpa's house!  HOLY SMOKES!  I just told her you have to do what Shawn, Alisha and Brian ask you to do. For so long I think..actually I know we treated her like a baby and thought she had no idea what was going on......WRONG! She is a normal 22 month old!  Just because she is not quite as active...she still knows!  My Mom has been saying that for months!  If she wasn't so stinkin adorable..it would be so much easier to discipline her :)

7-18-11

OT with Brian today and ST with Alisha.  I didn't get to talk to Brian today. But, Avery had a great day at speech today. Alisha says she is talking up a storm!  Makes Mommy happy! She is repeating everything! Alisha is trying to get her to put 2 words together...all the time. She does now if she is repeating you. For the most pary Avery is doing g...reat but Alisha wondered about her hearing.  She said that she hasn't got to hear Avery talk long enough to know for sure....I let her know that Avery has had fluid in her ears since birth and was supposed to get tubes in her ears. I am also having a copy of her last hearing test sent over to Alisha. We didn't do the tubes when we found out she had Pompe. We want to wait as long as possible becasue of the risks involved. Tubes could be something we do if and when Avery gets a port put in.  Avery just seems to be getting so strong. She can go from a sitting to a holding on standing position and a downward facing dog :) position! Thats my little yogi! She can pull herself up to things. Sometimes I will catch her standing next to her little chair barely hanging on! YES!!!!  Tonight she got into Mya's bed ALL by herself!  She is ready for a sleepover with her sister.  If I thought they would get a wink of sleep I might go for it...but I don't see it happening anytime in the near future! Even though the day to day life, and hurdles that we now jump on a daily basis sometimes TRY to get the best of me...I LOVE my girls with every ounce of my being!  I have NO DOUBT that is why I am on this earth!
Trying to gear up for ERT #5 this Friday. Grandma Rain will be coming with me again :)

7-12-11

Today Mommy was in another world....and we got to therapy about 25 mins. late.  But Shawn worked with her anyway! Avery is just a little talker now!  I guess Mya going is all it took!  We are off tomorrow...and I'm looking forward to it!  Sometimes we all need a break...I've learned that the hard way over the last 3 yrs!  Mya enjoyed staying with Mom and waiting for Avery.  She thinks we need to walk to the gas station every time and get a snack...I just give in :)...JK I love getting snacks!

7-11-11

Happy 7-11..no slurpees for us today. Just therapy! We had OT and ST today!  Brain said she did great as usual :) Avery did the obstacle course for about 20 minutes.  GO Avery!  she has SOOOOO much more energy and strenght now!  As for ST....SHE HAS SPOKEN..to Alisha that is! Finally, taking Mya in with her helped. Mya was SO proud to be a helper,.......and a great one at that!  Alisha came carrying Avery through the door like normal and Avery was talking up a storm! She was quacking like a duck! Adorable. She went from being mute there to jabber jaws! Alisha said that Mya kinda just played and did her own thing..but it must have been the comfort of her being there for Avery. Alisha said she was repeating animal sounds, singing songs, and grabbing at her pant legs saying..up..up! FINALLY!  I am so happy and so is Alisha.  She couldn't even tell me how proud of Avery she is/was.  Here's to Avery being a jabber jaws! Cheers!

7-8-11

First off I would like to wish miss Avery Kay a Happy 21st month Birthday!  She is gonna be a big 2 yr. old before we know it!
Infusion day #4.  It went great!  We had a nice sunny day....for a change.  Lorraine went with me and Avery today.  Wade worked and stopped in for a few minutes. Again, Avery was such a big girl.  No tears!  Wow I love her... so much.  The worst parts for her is the rubberband thing at the beginning to find a good spot for the IV and removing the tape at the end of the day.  She gets close to crying..but holds back.  I am proud of myself today for holding Avery while she got the IV and not crying myself..usually Wade does the holding. The day went SUPER fast.  We got started right away and were home by 3pm!  Perfect, I hope every single infusion goes as smooth as today..for the rest of her life! A special thanks to Lorraine for going with us today.  It was great to have someone to help and share what can usually be a really loooonnnnnnnngggg day.

7-7-11

Avery got fitted today for her orthotics :)  I don't mean this in a bad way but they are gonna be so cute on her.  They made a cast like thing to measure to be able to make the real thing. Avery was so big ..switching legs when he asked and letting a complete stranger do all the measurements. They will be done in 2-3 weeks. We will have to get a ne...w pair of shoes...something in a bigger size and a wide width to accommodate the orthotic. Avery will only wear these when standing or practicing standing becasue they will stop her from crawling and that is NOT the goal...we want her to crawl then walk. She does so some crawling but we would love her to do more!  Infusion day tomorrow :(

7-6-11

OT with Brian today and ST with Alisha.  Brian was impressed with all of Avery's improvement.  He didn't see her for two weeks...and she has changed a ton.  When he asked what was new with Avery...I had a list to tell him :) Happy and excited mommy!  Brian said she did the obstacle course with no problem and barely any help...she only needed help g...etting up the stairs..which surprised me. Alisha was happy to report that she finally got some sounds out of Avery.  YES!!!  I hope Avery is finally opening up to her.  Alisha wants me to bring Mya in on Monday to see if that will help with Avery talking. Look forward to that...and so is Mya! She can't wait to be a helper...and I know she will be a good one!

7-5-11

PT with Shawn. Avery couldn't wait to get a sticker today...sticker, sticker, while pointing at her shirt.  So cute. Shawn mentioned today that we should look into getting/going to a Physiatrist- someone that specializes in Physical Medicine and Rehab.  That would then be our go to person for anything we need in this therapy journey.  For example.....orthotics or a walker. Good idea..I think. Just one more appt. to go to.  BUT if it will help Avery...we will go.  Shawn gave me a few names, none that are that close to Holly.  Will let you know..she also said it sometimes takes months to get an appointment.

6-30-11

PT with Shawn today..and Miss Avery got to hang out with Daddy too!  I don't know who was more excited, Daddy or Avery.  Wade said he really liked just hanging out with Avery because it is usually Daddy and Mya.  Wade took Avery to PT and then to get a chest X-ray. The X-ray is to look at her heart and lungs today to be able to compare later...to s...ee if there is improvement! This is usually done before the first ERT starts but Dr. Stockton thought that it is/was more important to get started with the enzyme ASAP!  Shawn said that Avery will get fitted next Thursday for her orthotics! 

6-29-11

Brian is still on vacation so Avery got to play with Val today!  She is always so excited to work with Avery!  She said she gave Avery a tangy vinegarette dressing to eat(this will sometimes "wake" them up)She said also anthing sour, tangy or really sweet will work.  She said it didn't really wake her up like she expected but Avery LOVED it and jus... wanted to eat it!  Hello...Avery LOVES  to eat! and especially condiments. She is the complete opposite of Mya who really does not like anything like Ranch or tartar sauce, mustard etc. AVERY LOVES condiments!  Too funny.  Val worked a lot on her core today.  In the swing and on the bouncy ball is where they did the most work today.
After OT with Val she goes to Alisha for ST.  Guess what....still not a word!  Again, she said it is not behavioral.  Alisha was singing songs to Avery and Avery was moving her lips like she was gonna sing but nothing came out!  What a stinker.  Alisha says"I think it is gonna happen next week, she is really close to talking to me" I hope so!  Wade asked.."what do they do for a half hour if she doesn't talk?" Well, they do lots of recognition, and selecting and choosing(Alisha holds up two items and Avery has to choose, identify what she is asking.  The hope is she will say what it is!!  I hope sometime soon.  They all know she can talk and sing because they watched the video of her singing in the tub. Alisha says there is not a theapist there that would not take her home..they all love her so much!  Val said ..she loves her hair(of course) and it is so soft.  My response...glad you touched her hair on a day she didn't have yogurt or syrup......because it would be crunchy on those days :)  Avery also got to bring a sticker home to Mya..and boy was she proud of that!

6-28-11

PT with Shawn today.  Mom forgot Avery's shoes, duh! so she didn't do much standing or walking today.  Good news..our insurance covers 90% of her orthotics. Shawan will probably get her fitted next week!  We just have to get a script for them...I will email Suj tomorrow to do that! Avery is doing so great! 

6-27-11

Brian is still on vacation so Avery just met with Alisha today....and guess what????? she didn't say a word..again :/    Alisha reminds me it is not behavioral and she will talk when she is ready.  I can't keep her quiet at home!

6-23-11

PT with Shawn. I went back half- way through her session to observe and learn some new things to do with Avery. Shawn had her standing in this huge contraption...I think it was called a Walking Danny...not sure on that.  She was all strapped in and standing and playing with toys.  She looked like such a big girl.  We don't get to see her standing t...hat often. She said she wants to get Avery standing as much as possible. She sent home a walker with us to see if Avery would work with it at home. She also would like us to have her crawl over anything possible...make an abstacle course and put her favorite thing on the other side of it so she has to work for it!  We need to get this girl strong! Shawn also mentioned having her "cruise" along the couch...which is standing and stepping sideways while holding onto the couch.  Good ideas and a change of pace for us = good!
P.S. Shawn wants us to get a script for some braces for her ankles and feet to help her get moving! Lets cross our fingers that insurance will cover them....I will be calling Monday!

6-24-11, Infusion #3

Infustion day #3.  I find it odd that every single time we have went to Children's hospital...it is raining! We've learned our lesson and leave in plenty of time!  Although the sick feeling I have the night before and the day of are still haunting me every single time....things are getting into more of a routine. I think that I will have that awful... feeling everytime because she is my baby...and I so bad wish this was me instead of her. She is such a trooper though! It is always a VERY long day for all of us. She never will sleep either :( This time it took forever to get ther meds going..we were there for about 2 hours before they started. So keeping a newly active 20 month old occupied for 7 hours is nearly impossible.  We are running out of ideas! We do movies, stickers, she is on my lap then Wade's then back in the crib.  We bring food, drinks, and plenty of snacks which falls in the food category I guess!..but even she is bored with that. Oh well, we will have to get creative I suppose! Ideas are welcome! She did such a GREAT job getting the IV in...not a single tear!  Amazing.  And the "stuff" that goes along with the IV doesn't even phase her.  It is becoming normal to her.  We talked to Dr. Stockton about her improvement...and how great she is doing and we asked if he thinks it is from the Myozyme.  His reply..."we can't be sure but unfortunatley it is probably not from the drug this early on. But there always is a chance it could be" Since there is not much research because of how new the drug is and every child is different...that is the answer that we have to accept.  We are OK with it...our theory is...it doesn't matter if it is the therapy or the drug making her stronger...the point is...SHE IS GETTING STRONGER! We will continue to do both!  And you are looking at two happy and proud parents! WOW! When I step back and look at her improvement in the last 8 weeks..it amazes me.  She is so determined! and I love it! I again want to thank everyone for your thoughts, and prayers and all the caring comments!  It really helps us to know that we have one of the strongest support systems around!  And there is no doubt we need it at this time! Keep the good thoughts coming our way! 

6-22-11

OT with Valerie today.  I thought maybe there would be some tears because it wasn't Brian...nope!  I love it when she proves me wrong!  She did so great!  Valerie is filling in for Brian while he is on vacation.  Valerie was impressed with Avery.  She commented how she knows everything that is going on around her and she responds to everything she ...is asked. She just doesn't talk to any of the therapists! She had Avery working a lot on her shoulders...reaching above 90 degress and bearing wieght on her arms.  She said she would like to see Avery play with both hand together rather than doing one thing with one hand and when finished with that doing something with the other hand. Hmmm... Maybe Brian will have some ideas on how to work on this at home!  We will see Valerie next week. No ST today..Alisha's Grandma died :(

6-21-11

PT with Shawn.  I mentioned that I feel like Avery isn't challenged enough at home while doing her therapy. I feel like Avery is getting bored. Since she can move so much more now she has no interest in doing therepy.  Shawn said to start by switching rooms where we do it(currently in the living room)So move we will do! She is also going to have me... observe on Thursday to maybe get some new ideas!  I secretly can't wait...so I can see Miss Avery at work!
We also got great news today from Suj-our genetics counselor! message below..
(hi- just wanted to let you know that i received notification that Avery qualifies for CSHCS. it is my understanding that they will send you paperwork to fill out and then determine your fees and coverage.  thanks suj)
CSHCS stands for Children's Special Healthcare Services. http://www.michigan.gov/mdch/0,1607,7-132-2942_4911_35698---,00.html 
This could help with some of the cost of her treatment...if for whatever reason insurance doen't cover it.  Relief!  So far everything is going as planned! :) :) :)  Lets keep it that way!

HUGE  P.S.
Avery took a drink from a straw yesterday....she finally got it!  YES! We were drinking a juice box at Lexi's house!  I was SO excited!

6-20-11

No OT with Brian today...he is on vacation for two weeks.  We will have a sub on Wednesday of this week and next. So ST with Alisha, who adores Averys so much.  Alisha said she still can't get her to say anything..but Avery is responding to everything.  Meaning she can point things out and knows what everything is..just refuses to say it!  She said... specifically that she does not think it is a behavioral issue but more of a comfort thing.  She says this because I tell Alisha she is a jabber jaws at home.  What a little stinker! We just posted a video of Kay Kay climbing the stairs. Yesterday and this morning she climbed the bottom set of 7 and seemed too tired to go up the next set of 7.  But tonight...she did them all!  She is so determined.  These things she is doing makes us realize that so many other things just DO NOT matter! This whole situation has just changed who we are and we couldn't be happier about that!  Keep up the GREAT work Miss Avery!   

6-16-11

PT with Shawn today.  Today after pt  Miss Avery came walking out with assistance and a walker.   Avery immediately let go of the walker to point and show me her Cookie sticker...so stinkin funny!  Everyone laughs at how obsessed she is with stickers. This time the walker was facing the way an elderly person would usually use it. Shawn commented th...at Avery tends to bend more at the hips when it is facing this way.  Shawn is trying to figure out what is best for her. She commented that Averys hips are still pretty weak and we need to work on getting them stronger...which is what we are doing. I think it is just gonna take more time than the other muscles and I have no idea why.
On another kinda gross note..Avery has problems going #2....and it is probably because she doesn't walk/move much, doesn't stand upright and also her muscles have low tone making things move slower in that area.  Shawn's Mom is a massage therapist and gave Shawn some tips to give us.  They worked on her during therapy and Avery started tooting...and sure enough when we got home....well you know the rest.  Anyways, we have to lay her on her left side and massage up one side, over her belly and down the other side.  (don't worry she wrote it down for me)It  seemed to work so that is a relief (literally) she is so miserable quite often because of this problem.