Christmas was great. Janessa was sooo excited and made out so well. She was so happy with everything. She helped the boys open their gifts. Isaiah wasn't his usual self but seemed to enjoy his Elmo. Avery still has not been himself at all. I am going to have to take him to the drs. His left side of his face is swollen and his eye is almost shut. I just worry b/c this is the side of his clot. He will not sleep much at night and yet wants to sleep all day. He is very low energy and just doesn't look great. I am just really thankful that we were not in the hospital for Christmas and enjoyed a nice quiet day at home.

Tomorrow is Daddy's Birthday.

HAPPY BIRTHDAY DADDY. HOPE YOU HAVE A GREAT DAY. GREAT JOB ON YOUR BIG WIN TONIGHT. WE LOVE YOU.

MERRY CHRISTMAS

I can't believe Christmas is in 2 days. Time just flies. I am officially banned from going to any stores. I have spent way too much $$$$. I am just praying that the boys feel good for the day. Avery has been VERY low key. Certainly not himself and sleeping alot. Maybe just stress from the surgery and hospital. He is also doing alot of weird movements (almost seizure-like). Isaiah started his retching spell today so hopefully he will be better my Xmas to enjoy it. Janessa is driving us bonkers about opening up any gifts. She is so excited. Thankfully, we will have a nurse for a few hrs. on Xmas day to help out.

Wishing everyone a VERY MERRY CHRISTMAS

Home Again

I am sooo glad we are home for Christmas. I just can't even imagine not being home for the Holiday's. My heart goes out to all those families that are stuck in the hospital for Christmas. We are just really blessed. But at the same time, Man has this been a looong week. I am so happy to be able to sleep in my bed again. The first night at the other hospital, they barely had a bed for Avery and surely none for me. So guess where I slept....

In the crib with Avery. Luckily I am small, but still not the best sleep I have ever had.

So the cause of Avery's bleeding is still pretty unknown. Could be a combination of many things (reflux, stress from surgery, and c-diff is back again) the did not scope him b/c his blood levels were not affected, if they was the case then they would have scoped him to find the source. He does still have a blot clot in his neck from where the port was. It has gotten better but not gone so he will go back on the lovenox for a few more weeks. UGH........

The good thing out of this admission was getting a good GI dr for the boys and I have finally accomplished that. I just don't like many of the GI drs at Children's. There are over 30 there and you hardly ever get the same one on admission, so they know nothing about your child and are very cavalier about things. You are just a number and I honestly feel like unless your kid has a very severe issue then they will brush it off. You so have to be an advocate for your child. I just cannot leave your child and hope they things get done, you have to take charge of it yourself. It is very tiring. Then I get the "wow you know so much" Duh, it's my child, why would I not know.

I am glad to be home, luckily I already had finished all my shopping and wrapping. I really missed Janessa, Isaiah and Rick. Speaking of Rick, isn't he so sweet. He did a great job filling in for me. I just love him. Well back to work tomorrow and probably all weekend b/c I missed a few days. I hope you all are well.

Merry Christmas and Happy Holiday's to everyone.

I have been called in to pinch hit for someone who I could never replace. I am truly blessed to have Nicky as my wife. Not only does she put up with my many faults and annoying habbits but she endures almost all the responsiblities in keeping this family afloat. I don't think that there is a day that goes by that she does not have to deal with the health of our kids in some way. Sure, I would like to believe that I am a good father and a good husband but what I do does not even compare to what Nicky does for our family. Don't get me wrong, I do the laundry, I cook, I go grocery shopping, and I clean (well, maybe I don't clean so much) and I play with the kids whenever I get a second. With that said it doesn't even come close to what Nicky does. I am blessed to have her in my life and I consider my kids extremely fortunate to have superwoman in their lives.

Now for the reason of my post ..........
Avery had a successful Cochlear Implant surgery on Friday. He returned home from the hospital on Saturday and had no effects from surgery at all for the entire day. When he woke up Sunday morning we noticed that were blood stains near his head and just figured that he had some leakage from the surgery. No big deal right ? ...Wrong! A few minutes after waking up he began to vomit dark blood. Of course we really concerned and began to make plans in taking him to the hospital. Did I mention that this was all going on while there was a blizzard outside. Our only option was to call an ambulance and have him rushed to Lawrence General. Well, that did not go so well either. When Nicky and Avery got there they could not even get an IV in him and were really unsure as to how treat him so they suggested that he be transported to Children's Hospital by ambulance. So off to Children's they went. Unfortunately, they were not all that succesful either in figuring out what is going on with the little guy. Basically what is happening is that ENT is saying that it is a GI issue and GI is saying that it is an ear, nose , and throat issue. Oh ! Did I mention that another bllod clot was also discovered in Avery's neck today. The same story as always - so many questions and absolutely no answers.

Just in case you are wondering why I am posting now and never before this. I look at this as Nicky's journal and something that she does for herself. I read it daily and I can't thank all of you enough for the care and support that you show her on this blog. Today, I posted because Nicky is unable to while she is at the hospital. She wanted everyone to know how the surgery went and the recent update.

Thanks again for all your support.

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.