Avery is trying to stand

Since our trip to Chicago to see Marcy, Avery has been doing many new things. One thing that has caught my attention is her trying to stand. For a child that has minimal feeling in her legs, she is trying to bear weight. This is so exciting! The best part is, she has figured it out all on her own, no bracing, orthotics, walkers, etc.

AVERY IS 2 YEARS OLD

 

 

 

 

 

 

 

Can't believe our little girl is 2. We celebrated her birthday this past Saturday with friends and family. The pictures below are a few I took to remember her at two.

 

 

Many of you know I recently took Avery to Chicago to see Marcy, an ABM practitioner who has worked with Anat for several years. Although Avery see's Bethany twice a week for ABM, we both agreed it could benefit Avery to see Marcy. This could be a great opportunity for Avery. Bethany contacted Marcy to see if there was any days still available. Sure enough, we were able to get Avery on the schedule. We set up 4 sessions, two each day we were in Chicago. Since seeing Marcy,  Avery is getting in crawling position more often and is talking up a storm, or babbling and repeating words you say. I hope we can see Marcy again someday.

 

 

 

 

When we asked Avery to blow out her candles she blew it a kiss instead

Loving her cake

Nash was enjoying his cake too

Loved her new teddy

Some things are not what you expect

Last Thursday was Avery's appointment at the vent clinic. Things did not go as I had hoped. The pulmonologist explained the sleep study and showed me where it shows that Avery still has central sleep apnea as well as obstructive. They are going to do another sleep study in June, but feel she needs to keep her trache for now. They will talk about decannulating between the ages of 4 and 5. This is so frustrating, to have one doctor tell you one thing and then be told something completely different. It's exhausting having to figure out which doctor is telling you the truth and who to believe.  One of the reasons I was pushing for Avery to get rid of her trache was because she was doing so well at home and I will be starting school soon. We can't get nursing for her because she is not on the vent during the day. To pay for someone to come into our house and trache train them would cost too much. So I was hoping if she got rid of her trache we could put her in a preschool.  I talked to the vent team about my concerns and they think they can get the insurance to cover nursing during the day while I'm at school. If this is the case, that will be great! After Avery saw pulmonology, she saw the rehabilitation doctor. This particular Dr. isn't happy with us doing ABM therapy with Avery. Since it's not traditional therapy. She keeps pushing orthotics, standers and anything else I could strap to Avery so she can bare weight. Again it's frustrating when you are doing everything you can for you child, but keep being told its not enough. Needless to say I cried the whole way home. I feel so defeated. It seem to me that I have one good cry about every 6 months and then I'm good for awhile. Having a child with special needs is challenging not because of the child, but because everyone around you is telling you what your child can't do.

Always follow your gut

I recently contacted the ventilator clinic to inform them of Avery's recent tests and to get them on the same page as far as weaning Avery off the vent. Which is what her ENT wants to do.  During the conversation her sleep study was brought up. I pointed out that her results have not been explained to me. I have been told she no longer has central apnea but now has obstructive. Okay, where on this paper does it say that. As she started explaining to me the different categories and what they meant, she says "Avery's trach was open during the sleep study". I paused and said, "no she was capped for 5 hours and gasped to breath and was then put on her ventilator the rest of the night." I could hear some confusion in her voice. She said this changes everything. Another sleep study is going to need to be done. This sleep was documented wrong which then gave wrong results. No wonder everyone has been giving me a hard time about decannulating.  I know at home she breathes fine without her vent when she sleeps, so I couldn't understand what the problem was, now I know. Glad I kept pushing. This sleep study would  have been the deciding factor for Avery's trach.

Put your foot down and you might get somewhere!

The last couple weeks have been a blur. Our family was sick with strep, Jeremy graduated from MDOC(Michigan Department of Corrections) Madi  finished Basketball and will start Track next week, Gage is finishing up his basketball and will start baseball with Titan in a couple weeks and I have been trying to get caught up with my classes, since being sick put me back. With all that I have been trying to get some answers from DR.'s about Avery. I requested a second opinion from another Pediatric ENT in the same childrens hospital where Avery goes. They informed me that they would have to let her primary ENT know that I was requesting to see someone else. At first I wasn't sure if I wanted to do that (didn't want to step on anyones toes) but then figured I wouldn't be happy until I did. I like her primary ENT, he just wouldn't answer my questions. A week later I get a phone call from her primary ENT asking me if he had done something wrong. He wanted to know why I wanted a second opinion. I told him that I want to make sure I'm looking at all my options for Avery. He all of a sudden was very interested in what I had to say. He answered all my questions and we now have a plan for Avery being decannulated. He wants Avery to be weaned off her vent first. I'm guessing this will take about a month. Then he wants to wait 2-3 months to give her lungs a chance to get used to breathing at night without her ventilator. He will then remove the scar tissue that builds up in her trachea from the trach and do another sleep study to see if this helps with the obstructive apnea, if it does great!! If not then they will fit her for a cpap nasal mask and decannulate. I am relieved to have a plan in place and light at the end of the tunnel.

Avery is doing good, mom not so much!

I recently posted about Avery's upcoming procedures (bronchoscopy, tubes in ear, tonsils and adenoids removed.) I did not get the information I was hoping for and have been pretty frustrated ever since. Avery did not need tonsils or adenoids removed. She did have tubes put in her ears and granular tissue removed from her trachea where the end of her trach is rubbing. After the procedure the Dr. came and told me everything. I asked since her tonsils and adenoids didn't need to be removed what is causing the obstructive apnea. He said it looked like her tongue is falling back while she sleeps. Okay, so what can we do about it. He says there is a surgery that can be done where they put a screw at the bottom of her chin and tack down her tongue, this can only be done after her big teeth have grown in. WHAT!!!! Really that's my option, keep her trach until she is 7-8 years old. Dr. said I should be lucky that Avery has a good airway with her trach. Easy for this man to say since he doesn't live with a child that is trached and has no idea the work that goes into it. Okay!  Okay!  You can probably hear my frustration. I have spent many hours researching and educating myself on Pediatric sleep apnea. In hopes I can go to our next appt. and have something to back up my opinion on Avery's situation. I am in the process of a second opinion as well, the more information the better.

Avery's upcoming surgery

Took Avery to urgent care this morning due to low grade fever, cloudy urine and congestion. Came home with Urinary Trach Infection, Respiratory Infection and Cipro. Just another day!!!!!!!

Avery is scheduled for a Bronchoscopy on February 12th to see where her Obstructive sleep apnea is stemming from. Since she will be under anesthesia it would be nice if the Doctor could take care of the problem after the bronchoscopy. I sent an e-mail to her ENT and he got back to me and said he would do that. So she is scheduled for a possible adnoidectomy and tonsillectomy as well. If those need to be removed then she will be in the hospital for a few days. This will mean we are that much closer to getting her trach out.Yay!!!


Video of Avery taking a bath and showing me how she can wash herself.