Memorial Weekend 2012

We went up north to Jeremy's parents cabin for Memorial Weekend. We left on Thursday night and returned on Sunday. This was the first time we have traveled with Avery since her Trach. There was a lot of medical equipment, Ventilator, suction machine, pulsox machine, and replacement parts incase something broke. I was able to fit everything in an oversized duffle bag. We had a full load. Madi took a friend and our Black lab came too. Every seat in the van was filled, plus any leg room was taken up by Jersey(the dog). Jersey has never traveled with us before because she gets car sick. We had trouble finding someone to house sit, so we gave her dramamine and the ride was puke free! During our vacation Avery cut two teeth.We see two more getting ready to come through. The weather was so nice the kids were able to swim, play, fish, and paddle boat. It was a great time. We also celebrated Madison's 14th birthday, which happens to be today. Wow!

                                              Avery loves the swing

                                          Madi, Logan and Jersey enjoying the paddle boat

                                                        Gage and Titan coming down the slide

                                                  Swimming

                                             Happy 14th Birthday big girl!!!!!!!!

Good news all around

Avery's tests all came back with good news. Her hearing test showed that she hears better than we thought or should I say the doctors thought, so no hearing aids.  Her MRI showed that her shunt is working properly and the cyst that was drained on her spine has not come back.  The neurosurgeon showed me images of her spinal cord with the cyst and now. Her spinal cord is no longer pushed against her vertebrae but her spinal cord in that area remains thin. What does this mean? Well, nothing apparently Avery has proved them wrong thus this far. So I suspect she will continue to do so. The neurosurgeon did express how he was surprised that she gained function back in her legs. Funny how he never mentioned that after the surgery. Although it probably would've been more than I could handle at that time. We are so thankful for all she can do. One more thing, Avery did not have to be on a ventilator during her ABR test or MRI while sedated. This is awesome! Typically she is on the ventilator anytime she is asleep. Could she be out growing the sleep apnea? This is a possibility. We may be getting rid of her trach sooner than we thought. Thank you for all your prayers and taking this journey with us.

A day full of tests

Today we are at the hospital. It is a day full of tests. We arrived at 9:30am. Avery was taken back to be prep for her ABR test(hearing test) and then her MRI. She will be sedated for both tests. They figure she will be done by 2pm. We then have an appt to see the Neurosurgeon at 2:30pm  to get the results from the MRI. Please say a little prayer for Avery today. Pray that her hearing test comes back normal and her MRI shows no signs of abnormalities.  I have Titan with me today so he will keep me company while we wait.

Avery has a voice

Avery had 3 appts on Monday. Audiology, ENT and Speech pathologist. Her hearing test revealed mild hearing loss. They want her to follow up in a month to see if anything changes. If it don't they are talking about hearing aids. Not the greatest news, but no doubt Avery will overcome it. Her ENT appt went well. I talk to doctor about a speaking valve and he agreed. He had us see the Speech Pathologist while we were there so she could get one. The speaking valve is a plastic piece that fits over her trach. It allows air in, but not out. When she breathe out it goes up past the trach and out her nose and mouth. This vibrates the vocal cords and allows her to make noise. When they put the valve on it was music to my ears. I haven't heard her little voice in so long. The last time I really heard her cry was over 6 months ago. Here is a video of her sweet voice.

http://www.youtube.com/watch?v=Jn2_MNfL6Mw&feature=player_detailpage

Busy, Busy, Busy!

                                                          Aunt Kathy with Avery

                                         A new swimming hat to match her bathing suit

                                                     New sunglasses

                                     It rained at the U of M game. They gave us ponchos to wear

                                                                     After

                                                                   Before

                                                                     old

                                                                     New

                                      Titan giving his quad a tune up. Like father like son!

Where to start. Last week was pretty busy. Lots of projects around the house. I found a set of dressers on craigslist repainted them and voila,  they're gorgeous! Needed some tile work done before Avery's birthday party, which was Sunday. Jeremy was so busy last week with school and getting ready for his teaching exam on Saturday he didn't get around to doing it. So when Friday came I googled how to tile and went to work. To my surprise the tile turned out great, who knew! Saturday we were invited to be apart of the Mott childrens hospital fundraiser at the University of Michigan. This is where all of Avery's care has been.  We got free tickets to see the spring game. We sat in the front row at the 50 yard line. Very cool and exciting for the kids. We were so close we could touch the players. The kids got autographs too. Sunday was Avery's birthday party, although the weather was a little gloomy the pary was a hit. We all enjoyed visiting with each other.

Happy Birthday Avery!!!

Hard to believe the day is here, Avery is a year old today. She has been through so much and continues to smile.



Check out Avery's video http://youtu.be/iDhkXkiIDkA

Easter 2012

We spent the day with our close friends Shelley and Travis. The food and company was wonderful. We are blessed to have such great friends.

                                          Shelley and Travis

                                           Xavier and Titan

                               Daddy sleeping after Easter dinner and Avery not wanting to sleep

                                                        Sweet Madi

                                           Gage reading to Titan before bed

                                           The clubhouse is coming along