Great way to start the day

                                            Finally, happy girl!

                                                           Another battle wound

Avery is finally starting to feel better, she gave me a big smile this morning. Oh, how she melts my heart. I recieved a phone call from Avery's pediatrician yesterday with the results from her urine culture. It showed a bacteria called psudomonas. This is one of the more severe bacteria's for a young child and the only thing to treat it with is Cipro. This drug isn't recommended for children under 18, as it can cause joint and muscle damage.  They were considering putting her back in the hospital. I was upset I really want Avery's first Christmas to be at home with her family. The doctor called back late afternoon and said she could stay at home but had to be monitored closely.  I was so thankful. This morning is the first time I have finally seen her getting back to her old self.

Waiting for life to slow down a bit

Where to begin. Lets start with my little bean, Avery. Today she woke with a fever, I called the doctor and they had me bring her in. Her appointment ended with a UTI and some antibiotics. She is still not her self. I haven't seen her smile since her surgery and she has the sweetest smile. Its so nice to have everyone home, we are enjoying our new house and all the room it has. The kids like to play hide and go seek. We have been trying to get everything organized, our house, our bills, changing our address, selling our other house, gettting it cleaned so the other movers can move in and getting our kids registered at their new schools. Everything has been going smoothly except getting the kids into school.

                                        

                                             I miss these smiles!

                                                          After her back surgery, still very swollen

                                                    Decorated Avery's room

You would think that would be the easiest. Well it turns out not to be true. When Jeremy and I went to the administration office to get paper work we were told what elementary school Gage would go to. We were pleased, as this was the closest school to our house. When we brought the paper work back we were told  he would be going to a different school. We asked why and were told a problem came up. After a few more questions we found out that an ex-family member who's daughter goes to this school(our niece) told the school horrible things about Jeremy and I and did not want Gage at that school. So the school decided they would just move Gage to a different school without talking to us or even meeting with us. After phone conversations with the principle and the superintendent we have decided to seek legal counsel. Just when I thought we were going to get a break, now we have this to deal with.

Avery is home

We don't have internet at our new house yet, so thats why I haven't blogged.  Avery came home on Friday. She is pretty miserable and very  swollen from the surgery.  She is sleeping a lot and when she's awake she cries. I feel so bad for her. Nothing seems to make her feel better. Starting to see a little bit of movement in her legs, which is a good sign.  Please pray for fast healing!!!!

Avery is still pretty sleepy

Avery is doing pretty good. She is on a lot of pain meds to keep her comfortable. They are getting ready to do another MRI to make sure everything is looking good from the surgery. They will have to sedate her for this. They want her to remain flat to keep any pressure from aggrevating her back. She has been put back on IV feeds until after the MRI. She cries when she sees me, then I feel bad because I can't comfort her the way she wants. This to shall pass.

Avery is out of surgery.

Wow 6 and 1/2 hours later, Avery is out of surgery. She is doing well. The cyst had put so much pressure on the spinal cord that her spinal cord was flat, where the cyst was. They also tapped her shunt to make sure there was no pressure built up. Her shunt looked good.

Surgery taking place

Avery is now in surgery. I was told her surgery is going to take 5 1/2 hours. They are going to have to remove some of the bone in order to get to the spinal cord and hope to put the bone back. She may also need a shunt revision.    http://www.umm.edu/ency/article/003019.htm


I know so many of you are praying for our little Avery. Thank you!!!!

Surgery tomorrow

Avery is set for surgery at 7:30am tomorrow. Our house is coming along. We have almost everything out of the old house. Our new movers want to be in before Christmas. We our trying to get the old house empty and clean for them.

Avery is home for a short time

Avery came  home on Thursday. Before we left we found out that she has a tethered cord as well as a 3 inch cyst on her spine which is causing her legs not to work. She is scheduled for surgery on Wednesday and will be in the hospital for another week. We are also moving. We have  almost everything out of the house now. We will do the garage and yard shed next week. Our friends Shelley and Travis have helped us all weekend, thank goodness for all there help. Moving stinks, its alot of work, but our new house is so beautiful.

Day 38

Well today was eventful. Jeremy and I started our day with meeting  a home nurse to care for Avery when she comes home. This meeting did not go so well. This person informed us that he smokes and will be taking smoke breaks, and has fallen asleep before while on duty but has always heard the ventilator alarms. How reasurring!!!! Of course we won't be having this person come to our home again. If there is anyone who knows an RN that might be interested in taking care of a little girl at night please let me know. I think the hardest part about Avery's care, is that we will have a stranger in the house. I know eventually we will find a nurse that we fall in love with and will become a part of our family.  I went to the hospital to find our about Avery's MRI, while Jeremy took another load over to the new house. I spoke with one of the residents about the MRI. She told me that Avery had a tethered cord as well as a fluid filled cyst that was flattening her spinal cord. The cyst is about 3 inches long. Of course I asked if she could still go home tomorrow. She couldn't give me an answer. Avery's neurosurgeon was contacted and will make the final decision tomorrow.

It's funny how I was convinced today that God new I couldn't  handle anymore, I needed a break. So the news from the MRI was going to be good and Avery would come home tomorrow. This wasn't the case, I am so tired, I feel this is all finally catching up with me.

A bit overwhelmed

Today we met with the medical equipment company at our new house. They brought us a months worth of supplies for Avery. I had no idea she would need so much stuff. After 3 hours of learning the equipment and all her supplies, Jeremy headed to school and I went to the hospital. Avery was scheduled for a full brain and spine MRI at 3:30pm today. Since Avery has been in the hospital we have noticed her losing function in her right leg as well as her trunk. One of the things the doctors will be looking for with the MRI is a tethered cord, which could be the cause of her function loss. If you want to know more about tethered cord.

http://www.ninds.nih.gov/disorders/tethered_cord/tethered_cord.htm


 I got to the hospital at 2:30pm. By 5:30pm Avery was getting a bit fussy since her milk feeds were stopped at 10am and she was hungry. She did recieve some pedialyte at 1pm, but then nothing since. Her and I paced the floors until she fell asleep at 7:30pm, still no MRI. At 9:30pm I finally had enough and had the nurse call down to radiology. They had canceled Avery and rescheduled for tomorrow morning. Sure would have been nice to know this sooner. The MRI will be the deciding factor on whether Avery will come home on Thursday or not. Please pray that her MRI comes back negative so we can get our little girl home.

Moving!!!

                                          Avery's old room

                                     All the equipment I have to have with me anytime we go anywhere

                                                     New bathroom at the hospital in Averys room

                                                      TV, refrigerator

                                                    couch that folds out into a bed, rocking chair

                                           Avery is the first person to stay in this room

                                         The view from our room.


It's official, we have a new home. We start moving tomorrow. Our plan is to move Avery's and my things to the new house, so we can bring her home on thursday. Jeremy and the kids will move all there stuff after school gets out on the 16th. We then will get our old house ready for its new owners, yes I said new owners to move in by January 1st. God is amazing, once again he proves himself.

Day 35

Today has been super exciting. We moved into the new childrens hospital. The rooms are fantastic and the view is even better. We are on the 12th floor which is the top. We can see the scoreboard at the U of M stadium from our room. Its so cool to think Avery is the first person to be in this room. I have pictures coming.

Our 24 hour

Jeremy and I had our discharge meeting yesterday with all the docs about Avery. We now have a discharge date of December 9th. This of course will only hold true if we can be moved into our new home by then. We hope to have the keys in hand early next week. This is all so exciting. Every couple days I get a glimpse of my normal life when I'm able to go home and be mommy to my other children. For example last night I made a good dinner. Madi had her friend spend the night and Gage had his friend spend the night, we made chocolate chip cookies and played video games. I love being home. Today Jeremy and I are doing our 24 hour. This is where Avery is put in our care from 12pm today until 12pm tomorrow at the hospital of course. We will put all we have learned to the test. Avery hasn't been herself the last few days, fevers, not eating well, no smiles, sleeping a lot. Hard to know what it could be.  We just have to keep a close eye on her. Dan from physical therapy has been working with her and has noticed her losing movement in her right leg. Not sure what this means at this point. Dan is going to request Avery to see the Neurologist.