Good News

Yesterday Avery had an appointment with the Audiologist for another hearing test. As well as an appointment with the ENT. Her hearing test came back the same. Left ear is borderline normal and right ear has severe hearing loss. Her left ear will compensate for the right. As long as she continues to respond to us and her communication grows she will not need hearing aids. The ENT appointment was the one I was waiting for, of course the doctor was running 2 hours behind, but the news I got was well worth the wait.I had several questions about Avery's trache as well as her last sleep study. Dr.  looked over her sleep study and said that she only had 12 central apneas and over 200 obstructive. REALLY!!!! I was told from pulmonary that she still had central sleep apnea and they wanted her to keep her trache for another 18 months and then she would have another sleep study. Let me remind everyone that her first sleep study at 6 months old revealed 174 episodes of central sleep apnea in an hour. I would say she is doing pretty good!!!! I of course had DR. repeat himself 3 times, just to make sure I was hearing him correctly. Dr. checked Avery's throat and believes she has a narrow airway which would explain the gasping for air when her trache is capped. He also saw some fluid behind her right ear and is talking about putting tubes in. She is set to have a bronchoscopy on February 12th. What this means is if they can fix her airway then she will be able to get rid of the trache.

Guess who's 18 months old

                                                               Sweet little angel

                                                           The 3 amigos

                                                         Bathtime

                                               All four of my kids have worn this costume

                                                     Picked the cutest pumpkin in the patch

Hard to believe my baby girl is 18 months already, she still seems so little to me. Avery had her sleep study on October 1^st, this was to see if she would still need her trach.  It was a nightmare. For 5 hours Avery gasped for air. Finally the on call DR. came in and put her back on her ventilator.  Needless to say, after watching that, I think I’m okay with her being on the vent for now.  What I don’t understand is Avery can breathe fine with her speaking valve, which allows air in and forces air out through her nose and mouth. She doesn’t have any apnea that I can tell with this.  When she is capped she struggles to breathe in when she sleeps. If this was central sleep apnea it would show up no matter what valve she was wearing.  Avery had an Appt. with the vent clinic on October 18^th. I asked these questions and was basically told she needs to keep her trach and they will do another sleep study in a year in a half. I’m okay with her keeping the trach if she needs it. I’m not okay with it if it’s just because the Dr.’s are comfortable with her having it. They said her sleep apnea is mild now. I think there might be some obstructive airway issues this would make sense. Anyhow, I am waiting to see the ENT to request a bronchoscope.  I know I’m not the doctor, but I am Avery’s advocate!

Fall is here

I can't believe September has passed us by. It has been a busy month with Dr. appt.'s for Avery and Grandma, volleyball and school.  I think we are finally getting grandma settled in. She has a routine now which is good. We love having her here with us. Last Saturday was homecoming. Madi and her friend Grace went together. Grace's mom and I helped the girls get ready, hair, make-up, nails, etc.  The two were beautiful,. Madison is growing up so fast.  Avery is having another sleep study tonight at U of M. I am so nervous. The results from this test will be the deciding factor for Avery to get her Trach taken out. Please pray that all goes well and its a success. I can't imagine going to the store or church with just a diaper bag and baby. No equipment! It will be so nice when that day comes. Pray, Pray, Pray!

Life in the fast lane

                                                           Avery before surgery

                                                              Madi and mommy

                                                      Great-Grandma Dollie and Avery

                                                                    Before

                                                                     And After

                                                                Grandma's new room

Life has continued to keep us on our toes. Avery and I made it back from California. She has been doing pretty well so far. She got another UTI which was so bad this time she had bleeding. August 14th she had surgery. A Urethra Dialation, which will help with the UTI and kidney infections. So far so good. We have added to our family. Grandma Dollie moved in last week. She is 87 years old.  She lost her significant other on August 12th to pneumonia. Grandma needed  to be with family at this time, since I'm home throughout the day, we thought this would be good for her. We fixed up a room with new paint and furniture, so she would feel she had a place of her own. Madison made the freshman volleyball team and has already had one game. She is the setter for the team and very good at it. The boys are looking forward to school starting which will be on September 4th, as I am too.

Lovin the beach

                                                        Getting ready for the pool

        Grandma and Avery

                                                             My sister, Avery and I

                                                            My niece Lily and Avery

                                                           My nephew Atticus and Avery

                         Greyson, my nephew would put these glasses on and make Avery laugh

So I posted how Avery hadn't been feeling well. I was planning on going to my sisters for a couple days from Tuesday to Thursday. Monday evening Loma Linda Children's Hospital calls me and asked me to bring Avery back to the E.R. ASAP.  I asked why, they said because she has high amount of yeast in her bladder. I was a little confused since this has happened before and the doctors usually just give an antibiotic. It made me think there might be something else going on and they weren't telling me.  So I got Avery all ready and off we went, Danielle my sister in-law decided to join me. I'm so glad she did, since this was the start of a very frustrating evening. It was about 8pm when we got to the E.R. We checked in and since they new we were coming,  they brought us right back and did Avery's vitals. Then they sent us back out to the lobby to wait. 2 and 1/2 hours later we finally went to a room. I was still trying to figure out what the emergency was for us to be here. No one would give us a straight answer.  Every Dr. that came in was asking the same questions, Why is Avery here? Is she on oxygen? Does she have a feeding tube? Etc. It was decided by the Dr.'s that Avery was going to be admitted for her O2 sats dropping at night. Okay wait a minute, she is being admitted for something I told them after I got here, then what was the reason they called us to come down ASAP for.  It's now 2am and I am pissed. I am not leaving my child here. The next Dr. that came in was informed of my decision. Of course they had to read me the right act about how my child might turn blue in the middle of the night and I could have to call 911. I was willing to take the risk. This hospital was a joke. They did give me an antibiotic for the yeast and Avery has been great ever since. I'm glad I listened to my gut instinct.
I finally made it to my sister's the next day. How wonderful it was. She lives in San Juan Capistrano, a few miles from the beach. It was the vacation that should had started a week ago. I was finally able to enjoy myself. We spent a few hours playing in the sand, water and beach volleyball. Avery loved the water. Actually she did something she had never done before. I would put her feet in the water and let the waves hit them, she would get so excited, straighten her legs and stand. Of course, I was holding her under her arms but she was bearing the weight. So exciting to see her accomplishments. I am back up at my parents until tomorrow. I'm going to visit one my good friends. My trip is closing in. I am eager to get back home and see all my kids and husband too.

California Sun

The last couple weeks have been quite interesting. Where to begin. Lets start with last Saturday. I took Avery to the Dr's since she just hadn't been herself and I knew I was going to be flying to California on Tuesday to see my mom. So I wanted to make sure she was okay. Dr said she was fine. Sunday Avery didn't seem to be feeling well again, so Monday I took her back to the Dr's. They did a urine culture and trach culture. Tuesday I flew out of Detroit and landed in Ontario, California at 11pm. Avery did well on the plane, except when we landed her ears were hurting. By the time I got to my parents house and hooked up all of Avery's equipment it was 2am. Wednesday came and Avery was still not herself. She set off her pulsox machine several times throughout the night. I called her pediatrician and neurosurgeon in Michigan, they both suggested I take her in. So at 7pm I drove down to Loma Linda childrens hospital, which was an hour from my parents house. After several hours and an X-ray they discovered she had pneumonia. Her pediatrician from Michigan called a day later and said her cultures came back and she had psudomonas and strep. I'm glad I took her in when I did. Avery is a funny little girl, she doesn't  show typical signs of an infection, her behavior changes and she's fussy. So when the doctors see her they think she is fine until they do tests. Her pulsox machine has been going off everynight since and several times. I'm so confused as to what is going on with her. She is on a high dose of antibiotics, so she should be feeling better by now. Yesterday we celebrated my birthday. It was nice being with my mom, brother and family. Tomorrow Avery and I are going to spend some time with my sister and her family in San Juan Capistrano.

                                                                 Cousin Sam and Avery

                                                              Sleepy Girl

Enjoying the summer

                                  This was taken at the Rock, Roll and Bowl fundraiser for Spina Bifida

The summer has been great so far. We have had lots of barbecue's, fishing trips and doctor appts. Where to begin, Avery is doing wonderful. She continues to amaze me on a daily basis. She has 4 teeth now, which all came through in a week, boy was that a rough time. She is finally UTI free.  I recently found out about a new therapy.  It's called the Anat Baniel Method, if you have a chance I would recommend you check it out.  I met several families that have kids with Spina Bifida that have tried this method and have seen  amazing results. One boy in particular started this therapy at 6 months old, he is now 18 months old and walking or should I say running without any assistance. No braces, walkers,etc.  Of course this got my attention. I went to one of the sessions to see what it was all about. I was pretty excited to get Avery started and see how this could help her.  This type of therapy is not covered by the insurance.  So we are paying out of pocket. Her sessions are $50 an hour.. I have found myself selling things to make sure she is able to get this experience. She has had 2 sessions so far and will have 3 more this week. After her first session I noticed Avery lifted her behind up to help me change her. She had never done this before. After her second session she was able to get from a laying position to a sitting postion. This of course didn't happen immediately, but after a few days we started noticing her doing different things. Avery is now scooting across the floor.

A few Extras

I wanted to share an idea I found on Pinterest. Basically its a make your own water bed but smaller version. Take painters plastic, duct tape, food coloring, foam shapes, glitter and water. Cut plastic to the size you want, tape up edges and fill with cold hose water. Put food coloring glitter and foam shapes inside. This is so cool. Avery won't be able to swim this summer due to her Trach. This is another way to keep her cool and entertained as well. Here are some pictures of a small one I made, just to see how it would work. The next one I make will be big enough for the older kids to play on and maybe use as a slip n slide. I think I want to try it out too. Hee Hee!!!Avery now has 4 teeth, two top and two bottom. They all came in days apart from each other. Poor girl.

                                                      Loving her water mat

                                         

                                         Clubhouse and sandbox finished. I think we ordered
                                         a little to much sand. All the sand to the left should
                                         be under the clubhouse

                                          Madi running 55 hurdles. Right now she is the fastest girl in the
                                          8th grade in the state of Michigan. We are so proud of
                                           her.

                                                      The boys are on the same baseball team

                                         Mr turtle who we found in our backyard

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!!!!!!!!