Didn't last long

Unfortunately Avery's run of good health came to end this morning as we are now back in the Hospital at Children's in Boston. Nicky and I had hoped that we would stay on this good stretch through the summer but our little guy took a turn for the worse this morning. The scary part is that the doctors cannot attribute his decline this morning to anything specific.

It is so strange beacuse when Avery woke this morning he looked great and then by 10:30 he did not look like the same kid at all. It is pretty depressing to see little guy just lay there and there is absolutely nothing I can do for him. Hopefully this is not a long hospital stay and he will get to come home in a few days.

That's all for now. I will post with any new updates.


A very sad Dad !

I'm baaack

Did you all miss me and think I was in the hospital. This time, thankfully I was not. I did successfully go to Georgia with my good friend and spent time with my sister, aunt and family. It was a good weekend. I was nice to be able to get away and not have to deal with medications and sick kids and whining. But I surely did miss them all though. When you are away from your family, it really gives you a new appreciation. My sister and her family gave us a wonderful gift, her husband wrote a song for Avery and my niece is also part of it. Simply beautiful. I am going to figure out how to load this on the blog tonight, so please listen to it.

Janessa had a sleep over at her friend's this weekend. She did not seem to miss me too much but I sure missed her. I guess she is used to me always being in the hospital so it was nothing new for her. Sad.

Isaiah actually paid attention to me this time. When I am away for some time, he will often ignore me when I get home and just act as if I am not even there. Certainly his way of telling me he is ticked I wasn't around. It is always great to see his beautiful smile though. He has not had a cycle in 5 weeks. Shhhh. I am sure I am speaking to soon but I will take it while I can get it.

Avery, who is normally thrilled to see me was not so happy. He has been running a low grade fever all week and even had one today. He has been really tight throughout his entire body which is really concerning. This dr. follows us closely by email and phone. She got Avery's report from the last discharge from the hospital and said that he seems to be getting more and more involved with each admission. I had a phone conversation with her today and told her that I really thought that his disease was progressing and she AGREED with me. Not want I wanted to hear but..... It is reality. He last admission, he had a nerve conduction test and it showed mild to moderate peripheral neuropathy throughout his arms and legs. This is not good and is also a sign of disease progression. She said that this can be really painful and cause him alot of ailments which is really sad. She increased some of his meds and is adding daily valium to the mix. More comfort measures basically. I still hold confidence that he will not be in the hospital for the spring and summer. Just take it day-by-day. I just love this family and appreciate what I have. BTW, I cut my man's curls off and will post pictures soon.

HAPPY EASTER

Praying for all the families that are in the hospital during this holiday. We were worried that Avery would end up back in the ER. He woke up vomitting and diarrhea. Luckily I have alot home meds to stop the vomitting and knock him out. He stopped vomitting and slept for 3 hrs. He woke up looking much better. Hopefully he does not start back up again. I am going away this weekend with my girlfriend to see my sister in Georgia without kids. I so need a break. Please pray the little man stay healthy this week. Hoping everyone is having a great day.

Things are amazingly quiet right now. Wow. Everyone is feeling great. Avery is very happy to be home. He is very smiley and seems much better then his last release from the hospital. Praise the Lord is all I can say. Hopefully things stay relatively quiet for a good while. The blog my actually get a bit boring....Although, it is my life and boring it has never been. Here are a few pictures. Some brotherly love, Janessa dressing Avery as a girl and smiley man.

He's HOME!!!!!!

Praise God, man things were really scary last week and I thought he would not make it out. But like his momma and dada he is quite the fighter. He has made a full recovery and is home tonight. The drs. wanted to keep him another night on one more day of IV antibiotics but there were sending him to the regular floor. I was really uncomfortable with this b/c it would open him to more infections. So I opted to take him home today. So far 4 kids have died in Mass. of this strain of flu, so I am thrilled Avery survived. Isaiah was not so happy that his little brother was home but we sure are. Isaiah is not actually feeling well either. I pray he is not getting the flu (he has cold symptoms). Our plan is to stay out of the hospital during the spring and summer. We really need a break. I sure hope it is coming.

GOOD NEWS!!!!!

I am very happy to report that Central Catholic is the new Massachusetts State Champions. Woooooohooooooo

I am so overjoyed for my husband and this special group of kids. They have endured so much this season and fought to the end. WTG guys.

Also happy to report that my little man is on the mend. Woooohoooo. He is doing so well and hopefully will be home in a few days. Man what a week but I am happy with its ending all around.

My little Warrior

Wow, this has been a week of many highs and lows. First with Rick's big wins and Avery being in ICU. This little boy is still here with us b/c he is such a fighter. We do you think he got that from (mom and dad). There were a few times this week when I thought he was just too tired to keep fighting but he showed me differently. Between the flu and pneumonia he has been working really hard breathing on his own but tiring b/c he has been breathing so rapidly in the 80s to 100s where he should be in the 30s. When he shows that he is tiring out then he will go on the ventilator to give his body a break but so far he has been able to avoid it. He needed a blood transfusion yesterday and is on IV nutrition. Hopefully these give him the energy he needs. I had not literally slept in week and came home last night to sleep. I am so physically and emotionally exhausted and am now sick which is to be expected. I am taking a break from the ICU today so I can attend one of the biggest day's of Rick's career. He is playing tonight for the State Title for Basketball. You can check out some articles on him and his team and our family (particularly Friday's) at www.eagletribune.com in the sports section. Wish us luck.

Update from Dad

You know if I am updating then it is not good news. Nicky is still in the hospital with Avery and the last couple of days have been very scary. In addition to the ongoing serious respitory issues, Avery has also come down with pnuemonia (spelling?). What has scared Nicky and I so much this time is that Avery doesn't seem to be improving or responding to any medical treatment at all. It got so bad that Nicky and I had a discussion with dotors today about DNR. There has never been anything more depressing then realizing that we will one day need to put this plan in place.

As hard as this has been for me, I can't imagine how Nicky has gone through all of this since Sunday. What people don't know is that I get to live a dream coaching/working at CCHS while she takes on most if not all the burden and responsibilities of the boys. Sure there are days that I am at the hospital or take them to an appointment but I know that Avery and Isaiah would not be alive alive today if it wasn't for her. She not only is the expert (she actually knows more then most doctors)on the boys, she is a great audiologist, a tremendous mother and an incredible wife.


Hopefully I will be able to update in a few days with some better news. Please keep my little guy in your prayers.

A dramatic Change for Avery

As you know Avery went for a G-tube change,Well G-Tube is the least of the worries. Avery now has the Flu. This is not good for Avery, this is quite dramatic for him. He is requiring much more intervention. If he continues to struggle with breathing they will have to move him to ICU. He is on oxgen, the next step is Cpap if he does not get any better. Nicki says that he is still looking gray, but she is optomistic and with many prayers from everyone, they will get through this trial. This appears to be more seriuos then we have seen in the past. Please everyone, take a few minutes out of your day to say a prayer for Avery and the family. I will keep everyone posted as I am informed by Nicki. Thanks Sherri

HE WON!!!!!!!!!

Man, what an awesome and yet stressful game. But Central won. Go Raiders. So off the the Garden. Did I mention that Rick was voted Coach of the Year too. I am just so darn proud of him. After only 2 yrs, 48 wins and only 8 losses he is so in his element. Awesome coaching.

In the meantime, I have to bring Avery to the ER in the am b/c his feeding tube is clogged which really stinks. He also has been having some high fevers so I am worried they will admit him to even though he is going in on Wed. I so want to go to Monday's game. Wish us luck all around.

Our typical day

So today started off as usual. Getting 3 kids ready in the am both boys are up at the crack of dawn. Avery had not slept very much at all. They typical sleep deprived night in our household. Off to work to see 14 patients and done by 11:30 which is what I love about my job. So the nurse FINALLY calls me back about Avery's skeletal scan. So no other breaks which is great news but with the good is the bad. The report also said mild to moderate demineralization which is basically another term for osteoporosis. Really sad face....... I was not really expecting that one. As we really have no idea of how he got the breaks he has now and he is only 23 months we have no idea how we are going to prevent any future breaks. Very stressful. Also we got labs done last Friday and yet no call back regarding the results. Some of the results were really off and concerning yet no call back. I was the one who initiated the call on Monday and by Friday (one week later) get a call that things are off. Are you serious. So needless to say I was not happy about this. So the early day I had which I was planning on doing something meaningless for me turned out to be yet another day of heading off to the drs. for more bloodwork. Luckily, all of his labs looked much better. Again, just another break down in the system. I swear, if I was not an informed parent, my kid would be dead by now. Just really scary. Remember, you always have to be an advocate for your child, parent, self or family member. Healthcare these days is more of a business than anything.

Avery will be inpatient on Wed. of this week to start his study drug. So as you know I will be absent after tues. pm's post, so don't worry. I will try to have someone update how he is doing.

Tomorrow's is the big game for Rick. Please pray for his team. They have gone through so much this season and really deserve the big win. I am excited and yet so nervous. I swear, these kids make me want to have a heartattack, they are so stressful.

I will let you all know on Sunday am.

I was on such a high from yesterday that even though Avery's started his day is 6 am puking his guts out and being junky all day and needing lots of nebs and treatment, it was still a good day. It was one of those mornings that even though I was sitting in traffic for 2 hrs into work. I still "illegally" listened to my ipod with my headphones on just singing my little heart out not minding the bumper to bumper. No stress at all. I text Rick with how proud I was of him and he texted me back thanking me for being so loving and supportive. Went to work and had great conversations with 2 nurses about our blessings in life and how grateful I am. Still in a good mood even though Mr. Isaiah pooped all over my floor (thank god) for the mats. In general, just a good day. Tonight I am booking a weekend trip to Georgia to see my sister by myself. Yay. But tonight and I going to enjoy my dollar movies from the "redbox", hang with kids and have my usual glass of wine.

Enjoy the picture of the kids. Gotta love Isaiah my little wild man who is showing TONS of personality these days. He is very clear of his likes and dislikes lately.

Miss Sassy Girl

Aver feeling better

Isaiah getting into things

We have a great living room and it does not matter to him, he just loves to get into the tv and pull the plugs and always with a smile on his face.

TODAY WAS THE MOST AMAZING DAY!!!!!!!!!!!!!

WOOHOOOOO. Finally. I am so happy. First of all, Avery is feeling really good. He woke up so happy today. I decided to not give any pain meds b/c I wanted to see how he could do without them for the day. Well, good call. He had the best day ever. Smiling and just happy. We have not seen this in soooo long. I really feel there is a light at the end of the tunnel. My nurses were so happy b/c they just have not seen this in months and months. My sweet boy is coming back. So basically this kid has been living in pain for months and we had no idea. But now we know and I know he will be okay. Remember, his name means Courageous and this suits him so.

AND..........

I AM SO PROUD OF RICK.......


CENTRAL BEAT THE NUMBER ONE TEAM IN THE STATE IN OVERTIME TONIGHT. It was amazing. They were down the whole game up to 16 points at times., It was down the 2.1 seconds, he set up a play that got that tied in overtime. His player made the shot to tie the game. Then, they were unstoppable. He won by 12 points in overtime. Simply amazing. I just know Ryan (his player that died a day before the season) was watching over his team. They are gonna go all the way. GO CENTRAL. This is so what Rick is meant to do. He is great at everything he does, I just couldn't be more proud of him and a his team.

Feels so good to finally report positive things.

I know many of you were worried about me based on my last post. Thank you all for the kind thoughts and caring. I am okay. I think to many of you that know me, I am always happy go lucky and that is the case. Sometimes, I am just not feeling that and have bad days. I typically don't stay in a funk for too long and do a pretty good job at getting myself out. It just goes with the territory, I suppose.

Avery is about the same, we are thinking he also has a sinus infection which could also be adding to things. So we will get that squared away hopefully. He is getting his full skeletal scan on Monday to check for any more broken bones, hopefully none and the healing for his shoulders.

We got Janessa on a nice little token program to alleviate alot of our stress. She is very excited about it and hopefully makes things smoother around here.

Rick has a big playoff game tonight so we are going to that which will be fun.

I am also planning a trip to see my family in Georgia alone in a few weeks for a refresher. Overall, I am fine. Thanks again.

Here is a laugh though of how sleep deprived I am. My friend took me to the movies last night and we are waiting in a long line. I was digging out my chapstick in my pocketbook and not paying attention and talking as usual. What do I pull out and try to apply to my lips.............................

the round cardboard thingy to a tampon which apparently opened up in my bag. Thank god the cotton part was not attached with the string in tow. HEHEHEHE