Oh my gosh, these last 2 days have been brutal. Just as I thought. Today alone I spent 4 1/2 hrs in the car and half of that time was with Avery. I cannot believe I still went to work after leaving the house at 6am with Avery to drive a hr for pre-op. Tomorrow is going to be even worse because I have to go to work (hr drive) come back home and pick up Avery and go back in the car for yet another hr drive to be admitted to the hospital. They will admit him for fluids the night before b/c he cannot be without any fluids after midnight which is typical with any surgery. But b/c he is on the diet, he will need fluids. It was a nightmare b/c they had no idea what department to admit him through b/c he could not go under the Ear dr. b/c his speciality is not the keto diet, so we had to figure that out. So he is just going under general pediatrics the night before and will probably go to ICU the night after the surgery to be on the safe side and hopefully home on Sat.

Please keep my little man in your prayers that things go very smoothly.

I will let you all know how it goes.......

Lately I have to say that I feel really overwhelmed by my job. I don't know how many of you know that I work 4-5 days a week as an audiologist, depending on how behind I am (workwise). Don't get me work, I like my job and it really makes me who I am. Earning a Master's Degree was a huge feat for me and I am a worker by nature and always wanted to remain working even as a mom, no matter how crazy it gets. Plus it is a great income and we could not afford for my to give it up. BUT......

and the big but is....It is sooo hard to balance it all. As mom we hate to admit that and I have no idea why b/c we are certainly not superwoman but we try to be anyway (or maybe that is just me). Last week was the FIRST week on Lord know how long, maybe 4 months, that I have not had a drs. appt. and every time I have a drs. appt. I have to make up that work day. On weeks that I have 2 appts, well then I am really screwed b/c I still have pt. demanding replacement hearing aids that they probably never wore but want new ones b/c they are free and I have to run to replace them b/c that is how I make $$$$. Then I get tons of emails from work of places I need to go to check a broken aid for one that a patient threw out the window. LOL. It has happened!!!!

Basically, I am always behind on work and drs. appts that the boys need not to mention poor Janessa who just needs a yrly healthy visit and I have to keep rescheduling b/c it conflicts with drs. appts that are priority for the boys or work for me. Thank God, she is healthy. Not to mention it is a busy time for Rick b/c of basketball season. So basically on my own in this madness. Just really feel like I needed to get this out today.

So tomorrow's schedule is....

Get Isaiah and Janessa on the bus for school at 8:10, nurse takes over for Avery,
I am off to sit in 1hr and half traffic into the city to see 31 patients (yup, you read that right), no way I will get to all of them. Mind you, I am supposed to drop of patient's hearing aids nearby but have no time b/c I have to be home at 2:45 to p/u Janessa from school, then off to gymnastics, then back home to relieve the nurse, cook dinner and get Nessa's homework done. Hopefully at some point, settle down with my big glass of wine. Because......

I then have to get up at 5:30 am the next morning b/c Avery has pre-op testing an hr away at 7:45 and will be there until 10:30ish if we are lucky, drop him home with the nurse, go to the gym and then go to work 45 mins. away and be back for nurse hopefully for 5 ish.

I could go on and on but trust me, thurs and friday are not much better.

So if you have made it this far, thank you for listening. I soooo need to be cloned.

Thanking you all

I just wanted to thank you all for the wonderful comments that you leave us. I love that people are following this blog and always look forward to seeing comments. They always bring a smile to my face. This is my virtual diary in a sense which is great therapy for me. We are so lucky to have so much love and support around us, it helps us do what we do. Do know that I read each and every comment and even though some are annoymous, it is fun trying to figure out who wrote them. The comments go to my email but I do not get your email which would be nice so I can write back. Thanks again.

Love to you all.

Avery's New wheels

I LOVE IT!!!! He looks so good in this chair. He was able to sit in it for more than an hour, he loved it. I am amazed of his head control. Isaiah at this age and still needed soo much head support and lots of add-ons to the chair for him to tolerate it. Avery is only held in by the chest vest and does great in it. Janessa just loved it and wheeled him around the whole house when she got home from school today. She even put him in the bathroom, acting like it was an elevator. Hehe...

It's offical. Two wheelchairs.

Woooohooo, I am so happy!!!

Well some really good news. I posted the last time that Avery was getting his cochlear implant in FEb. Well....................................





There was a cancellation and he is getting it..............................................................................................



Next Friday. What a great Christmas present. The gift of HEARING.

I am just a little nervous, because the surgery is at a hospital that knows nothing about him. I actually used to work there as an audiologist and know and trust the team b/c I have worked with them before BUT when it is your child with all of Avery's complications, HMMM...

He is still on the blood thinner and the keto diet which I am sure they have no experience with. So I have to have them in constant communication with Children's. He will probably the hospitalized the night before on IV fluids b/c of the diet b/c his sugars with bottom out with no fluids after midnight. He will also need to be in the PICU for bleeding and mito issues. So it is very exciting but obviously nerve wrecking. I will keep you all posted.

Many faces of Avery

None of which are smiles, well except the last one but you have NO idea what it took to get that on camera. That boy just does not like the camera. I had to do back roll-overs with the camera in hand and hoping to catch a smile. Isn't he so darn cute. Did you check about the almost triple chin on him. He has turned into a little chunk-a-monk. BTW his Cochlear implant surgery was finally scheduled for the first week in feb. He has had it cancelled 2x b/c of illnesses. Please pray that this one sticks to my man can hear.

Can you say tired. That is just how Rick and I feel. I know he is really feeling it after the long emotional week he had. Poor guy. I am just tired altogether. Partly because I partied with my dearest friend Kim. I just love her. She is just one of those friends that will always be there for me no matter what, and likewise. She is my only friend that I have remained close with from high school. She had been through so much over the past few yrs but despite it all she has the biggest heart and always makes me laugh. We went out "clubbing" last night. I say it is funny, b/c we realized that we are just too old to be doing that. We are paying for the late night today. That is enough for me for a yr.

So this week I will have lots of pictures to post this week because my little man is getting his wheelchair. Although it makes me sad to say the word b/c it is the reality of two boys in wheelchairs. Don't know how I will fit both in the van. Ugh.......But it is what it is. And he needs it. He also got a standing which is this other piece of equipment to practice bearing weight on his legs. But we are waiting for his leg braces before he can go in it. I will post pictures of both boys in their standers and wheelchairs.