Not such a good day today for Avery. He started off his day screaming straight for 45 mins at 7am (felt like I was back in the newborn days). Well, when he cries, he gets junky and drops his sats which means I have to do alot of work to clear him out (chest pt, nebs. cough assist and suctioning) all at 7 am. All while getting Isaiah ready for school including bath, meds, dressed, teeth and his neb and into his wheelchair. While also getting Janessa's hair done and her off to school. While getting myself dressed and ready with work schedule and lunch ready. Did I mention that this is a pretty morning. My nurse does not get to the house until 8am and by then everything is done. So since I had such a crazy day, I had a short work schedule today which means done by 11:30 am Hehehe. Which means I got a Jennifer Weiner book "Good in Bed" and read the whole darn thing at the bookstore today. I was so proud of myself. So I brought another one of her latest novel.

Avery had a very fussy day for the nurse today and kept it up until bedtime. I guess, we can't have everything perfect. He required more methadone today. This poor kid, I just cannot imagine what degree of pain he is in. I have to think of a b-day gift for my little man. Although he does get to see an Ear, Nose, and Throat dr. for his birthday b/c of his chronic congestion, we are concerned it is related to his sinuses or adenoids. I will let you all know. Certainly hope it is not surgery related.

It seems that Avery has been in chronic pain for months. This is so heartbreaking. Poor kid has been putting on a happy face when he can but he has been hurting. So very sad. The reason I know this is b/c he is so much more relaxed and sleeping better since we added the methadone. Wooohooo. I will tell you that this Pallative Care team has been vital for our family. They are so caring and Listen to our needs and concerns and actually take action. This is so rare to find. Don't get me wrong, there are many great drs. and they mean well but they are not typically concerned about pain in kids who are medically involved, especially since they cannot talk. Can't tell you how many times the drs. have suggested tylenol or motrin. Hello, my kid is way beyond those meds. Bring on the narcotics. Whereas this team thinks it is unacceptable of a child to be in pain and will treat it. Avery was actually moving his legs more today. Man, when I look at pictures of him from last year, he was able to do so much more and now he can barely move any of his limbs. Just look at his birthday last yr. above. I sure hope he gets back alot of those skills. He cannot even bring his hands up or near his mouth at all. We have taken HUGE steps backwards and I hope that treating his pain will change some of these things and get my little guy back. Although a social worker in the hospital told me that I needed to define the "new Avery". This is something that I still have difficulty with b/c I still hold hope that I will get some of the old Avery back with persistance. See why I am a bit sad about my little man turning two. Also for the fact that they old special needs kids get the less people want anything to do with them. At Avery's age he is still a cute baby but before long that wears off and they turn Isaiah's age and all you get is stares from people. They are afraid to touch them or talk to him. It is really sad and I know people don't know what else to do except stare or avoid. But this is our world and we will always get the stares. I swear I want to get a sign on the boys wheelchairs that say "instead of staring why not say Hi to me". LOL.

Don't know if I told you all that I am going to a Conference on Mitochondrial Disease in June in Indiana. I cannot wait. I will learn a ton of stuff and be able to talk to the top mito dr. around the country and pick their brain. I am staying with some women that I met through one of my sites. It is pretty exciting.

Life is Good

Thanks for all the suggestions on the double jogger stroller. I actually could not sleep that night and woke up the next morning like an online maniac and finally found one on www.adaptivemall.com then after I ordered I got a comment from a friend on that link. LOL. I really hope it will work. It should be in by the end of this week. I cannot wait.

We were so excited to see Rick/daddy. We really missed him. It is so good to be a family again. Think we are all set on being apart for quite sometime.

Avery started the metadone tonight. Wish us luck. I really pray this helps his pain. He so deserves for feel good. Afterall he is going to be a big birthday boy this week. Sad face.

Good news is that I emailed Make a Wish for Isaiah on thursday. He is six and it is time for him to get his wish. I was first thinking about a trip for all of us. Isaiah went to Disney when he first got his wheelchair at 18 mos and had a great time although Janessa was sick as a dog and remembers nothing. So we don't have the best experiences with family vacations. With Avery being so up and down lately, I am so afraid that the poor kid with be lifeflighted somewhere. Well the crazy thing is they called me only 3 hrs. after my email. I was stunned. I cannot believe how fast they work. So I REALLY want this to be his wish. I think a trip is too much for him and he does not do well at all these days with the heat and being outside. He really loves his TV and rolling around. he also likes school. I am needing some suggestions again. Just no firearms. LOL. That is really a NO NO with MAW. Can you believe it.

Missing my husband. He is away and sometimes it is nice to be home and not have to worry about picking up after him or cooking dinner (although, I don't do that to often) but you know what I mean. Janessa has been sleeping in his spot which is a toss b/c she hits me more but it does beat his snoring. LOL! He will be home Friday morning, thankfully. We will do our weekly date night. It is always good to be home as a complete family.

Avery's day was slightly better today but more b/c we were on top of his pain. I started off the day giving him morphine b/c he was already showing signs of pain. He did start his morning at the crack of dawn vomitting and covered in poop. I know this is gross but quite the norm in our household. Nothing but bodily fluids here.

I am on the search for a double stroller for the boys. This is so very difficult. I cannot go out with them by myself without one. Which means they are typically housebound. Although their bodies to not like the heat or cold. Problem is Isaiah is the size of a typical 6 yr and Avery a 2yr. and a 6yr old is usually not in a stroller by this point. I need your help. If you can find online any double stroller that will hold both boys, I will be so very grateful. This is my new mission. A simple quality of life thing. You can post any links under the comments if you find one. Thanks

So it has been NINE Whole weeks since Isaiah's last cycle. Woooohoooo. I don't want to get my hopes up that he is cured but he has NEVER gone longer than 5 weeks since his cycles started. I just really pray this is the end of it. I will be so angry if/when he gets another one. It is just not fair. He should not have to gone through any pain. I am just thoroughly enjoying my handsome man. Would you believe he is going to be SIX yrs old. Wow. Time really flies. He has really come a long way. I just see this boy hanging out with us for many yrs. to come. He is so very smart, amazingly handsome and funny as all heck. His new thing is trying to poke out Avery's eyes. He does it intentionally, meaning he will look at me or a nurse before doing it to get our attention and the goes straight for his eyes. What a stinker. But I love it, because it shows some typical kid behaviors.

We are going on THREE weeks and No hospital. SSHHH (Rick is away so it is not an option) Avery has been pretty stable although his pain and tightness has not gotten any better. He spent the entire day grinding his teeth today and just straightening out his arms and legs. Poor thing just looked like he was in so much pain. We gave him morphine but that seemed to do nothing for him. I emailed the Pallative dr. and I think we are still thinking about methadone as a longer acting pain med. I am telling you, it is just so heartbreaking to see your kid in chronic pain and it is just not right. His quality of life is just so limited and I refuse to let him live it in pain. I will tell you that he is getting to be quite the porker though. This boy went from not gaining a dang pound over 9 months to gaining 3 pounds in a couple of months. Sounds good right, wrong.... the fatter he gets, the more dead weight he is, the more respiratory we are finding him. He is having a harder time respiratory wise and I am sure the weight gain is not making it any better. So there really is a fine line. My little man is going to be TWO next FRIDAY. Boooohooo. This is going to be a really hard day. Every birthday brings on a grieving stage. They can be really difficult. TWO is just going to be one of those for me. Six is okay for Isaiah but his second was really hard and his 5th b-day.

Janessa saw the SW today. She was so excited. Things went really well. She gave Janessa a book about having "someone with a serious illness in the family" workbook. It is great for her. She is actually asking me specific questions about Mitochondrial disease. It talks alot about feelings while we are in the hospital. It is a pretty involved book for good for her.

So overall, things are GREAT. Just really enjoying life without being in the hospital. We are loving it. Please God, let it stay this way, we really need it.

Things are wonderfully quiet around here. Isaiah is now up to week 9 without a cycle. His longest ever in over 3 yrs. I am so happy. Avery is stable which is also great. I am nervous b/c Rick is leaving tomorrow for 4 days and this week is our 3week mark of being out of the hospital. We have not been home for more then 3 weeks since December. So I am alone if Avery gets sick this week. Pretty nerve wrecking but I am sure thing will be fine. You know what is really sad, When people ask you how things are going and we define it by how long we have been hospital-free. Honestly, Rick and I aren't asking for alot in life, just to be able to be home and lead somewhat of a family life.

Last night we went to dinner with some dear friends and they are going through a difficult time b/c one of their kids was recently diagnosed with diabetes. Many people feel they are afraid to burden us with their problems but it is total opposite of that. We feel grateful to be able to help people in similar situations. Often I get they questions "How do you guys do it and stay to postive". Really there is no magic answer but a few things come to mind. We have an amazing support system all around us, things could be so much worse and we are lucky to be able to provide a good stable home for our kids, and this is the life we were given and we have to make the best of it. It does us no good at all to be angry and so woe is us. That is just not our style. Now that is not to say that we don't have bad days b/c we are human and we do but we just pick ourselves back up and deal with the next day with a new perspective. For me, it is really good to be able to talk to be and help others. RIck and really coming out of his shell and being able to talk openly about the boys. We really hope to be able to help our friends through this time. They will get through it b/c they will.

Another difficult situation has come up that we have to make decisions about. A WILL, which in another family would not be as difficult but for ours it is especially hard. Who takes our kids "if" something happens to us. We have asked a couple whom we love. But lets face it, this is a major undertaking. HUGE. and alot to ask of someone who is just starting their own family. We are totally stumped b/c we want to make the right choice for our kids and the person(s) we pick. We have to make it legal. We have insurance policies but with special needs kids, the state to own them and they and Janessa will be left with nothing. SO this is a big deal but not many options. Again, just another glimpse of our world. Let's just pray that we live a very long live together.

Thanks for reading. Prayers are needed for Marlo and Jaiden right now. Their family really needs a spell of good health for these girls.

Time for more pictures

Avery in his stander (yes, it is weird looking but he needs to stop breaking bones)

Janessa is at it again with Avery as a girl, he sure is a pretty girl though

Daddy and Zay Zay chilling

Miss Nessa with straight hair, she is just beautiful

Hmmm, who is missing. Nothing interesting to photograph about!!!

Things are actually quiet

Can you believe it. Always waiting for the other shoe to drop. But am certainly enjoying it. Isaiah has gone his longest in three yrs. without a cycle. It has been 7 weeks. Wooohooo. I am so happy. I will be upset when if and when he has another one b/c there is always that glimmer of hope that he has outgrown it. I surely hope this is the case. This poor kid just suffers when he is in a cycle. It is just torturous to watch. I am really sad that my Isaiah is actually hit puberty. Booohooo. He has alot of hair on his genital area. He is not even 6 yet. So sad. I asked the endocrine dr. and he said this was not unusual with special needs kids. But certainly sad for mama.

Avery is doing pretty good. He has been home for 11 days. Woohooo. I am really feeling like this will be it. We have actually beat the hospitalizations. Do you know that since last May (his 1st b-day) the only month we were home was in November. That was our only month hospital free. What a rough yr. I really feel like it has aged me a few yrs. It has certainly taken it's toll on Avery. But I do feel pretty confident that we will have a good summer and finally enjoy our home and pool.

Good news is, Our lift for the boys is in and we will get in together soon. So no more carrying Mr. Isaiah up and down all those flights of stairs. He will have his own elevator. This will also be great for the pool. It was so hard to carry him up and down the stairs for the pool. Now we can send him and Avery down in their wheelchairs to the pool. It will help our backs to say the least.

Janessa gets to meet the social worker next week and she is still pretty excited about that. She is really having a dilemma with an ex-friend in the neighborhood. She really does not like the girl at all and sees her everywhere. Janessa doesn't want to go outside b/c the girl is always hounding her about being her friend. This is a new obession for Janessa. Also, one of my nurses straightened her hair. She looks gorgeous of course but is totally obessesed with it being straight. She just kills me. Just love her.

Daddy is going away next week which is well deserved and I am excited for him. Just a bit nervous b/c Avery has not gone this long without being in the hospital and I am on my own if it does happen. Let's just pray that little man stays healthy. Although he does seem to know just when to go in the hospital.

Me, okay, I am back on my weight loss kick. My butt and thighs just are not fitting into my clothes anymore and it is time to hit the gym and eat healthy for a few weeks at least. Then I will be right back in the cycle next yr. Us women are all alike.

Our Anniversary

A special friend sent Rick and I away to the most fabulous place in NH. Thank you so much. We have a GREAT time. So nice for both of us to be able to get away. Can't remember the last time we did that. Can't wait to do it again. We forgot what is was like not to have kids with us. Funny thing is that out of all the anniversary cards, we both got each other the same one. LOL. We are true soul mates. He also surprised me with a lovely Coach bag. What a good guy.

Yesterday was a tough day but we got through it as we always do. We went to the endocrin. appt. first and they believe Avery had the broken bones probably due to his disease and also b/c of his bone growth being behind. He may qualify for bone infusions. Yay, naw not really. It basically is him getting an IV for an hr. once a month to catch up on bone growth. Not something I think I want to put him through. Again it is about his quality of life. Hmmm, yet another tough decision for the little guy.

Then off to talk about my boy's life plans. It was surreal to say the least. Still cannot believe we were sitting in a room with people talking about at what point it is okay to let your child go. Ugh. Who can say???? It is difficult to make those decisions until you are in the moment and yet you do not want to be in that moment and make tough decisions. All I have to say is that it is an family decision and one that does not come lightly. I feel we made the best decision for Avery. Hope it is not anytime soon. But I do have to say, I am very proud of Rick and Pallative Care has been the best thing we could have done for Avery and our family thus far.

So tomorrow is Rick and I's 10 yr. anniversary. We are going away to a beautiful place, I cannot wait to show pictures. I am sure we will have a great time. My nursing is all set up for the boys. Wish us well.

Tomorrow

Avery has an appt. with the endocrin. dr but then after that Rick and I are meeting with the Pallative Care team to talk about "DNRs" vs "full codes". Ugh, Ugh.

As depressing as it sounds, it is a needed conversation. Never one you want to have but when you have children with life-threatening illnesses like both of mine, it is enevitable. When we first had Isaiah, we thought we would be down this road immediately. But Isaiah just got better and better with time. Sure he has scared us a few times but he has always bounced back. I am sure a time will come when he won't but for now, he is doing amazing and exceeded all of our expections. Such a joy with a million dollar smile.

With Avery, it is almost totally unexpected, until this last yr. He started off soo healthy and seemingly stronger. Once we moved, he really went downhill. As you have all seen, it has been one thing after another. The poor kid has not physically had a break. He tries to be happy but I think he is chronically in pain and never gets the chance to feel happy and good. A good day for Avery is him smiling a great deal of the day, no vomitting, now weird tone movements, a nap, and no temperature. Kinda sad, huh. This baby deserves so much more than that.

Anyway, tomorrow is about talking about terms like to ventilate or not, to take him off the vent. or not. So we don't have to make these decisions while we are in a crisis. It will be in his chart. Of course, we can always change our minds at any point but at least we have talked about them out loud and everyone is on the same page. KWIM? I am worried about Rick though. I am very realist about Avery's future and certainly, he could be like Isaiah and overcome this hump and exceed our expectations or one of these hospitalization, he may not come home. I am not sure if he is ready to accept this and maybe he is and just does not like to verbalize it. Can't imagine how this feels for him. He has 2 sons that will NEVER walk or talk or maybe live beyond their teenage yrs. This is why God has given him his own basketball team. I am so grateful for that. My gosh, I am sure this sounds sooo depressing and I don't mean it to be. Certainly, I am not depressed at all. This is my life. As I always say, I am not getting another one and this is what God had in mind for me. So I am blessed with the life I have and have to know the reality of it. In any case, wish us luck tomorrow.

Heeee's home

Yup, a little shocked huh, well so was I. They called me yesterday just before I was switching with Rick saying that the blood culture was negative so most likely a contamination when they drew with blood. This was fabulous news. Woooohooo. So his fevers could have been a virus. Who knows at this point but he looked great when I got there. Janessa came to pick him up and he was sooo excited, I think he was like "momma" get me outta here". He was so smiley. He did not sleep at all last night but it was certainly better than sleeping in the hospital. Hopefully it is just a matter of adjusting to being home. He slept alot today today to make up for it.

The plan is to do anything and everything to keep this kid out of the hospital. He just gets sicker when he is in there and the more he is there, the worse for him it is. At this point it is a must. It is so hard to not get your hopes up b/c there is usually a down. But this could be the time. One day at a time is all we have. It is so nice when we can be a family sleeping in the same house. Isn't that a basic thing?????

Thanks for all your support and prayers.

I am off to swap with Rick at the hospital today. He has been there since Thurs (while I went to work) and I will be taking over through next week. Avery is still fighting a blood infection, although they are still not sure what specific bug it is which will better help them know which IV antibiotic to treat him with. He looks pretty tired. So I really think that his episode on Monday had nothing to do with the increase in med but that he was brewing this infection. Problem is that he has already blown 2 IVs. Rick said on Thurs. he was up form 1-4 am as they tried for 3 hrs. to get another IV in poor Avery. They finally got one in. So we have to pray that this lasts until his body heals. They cannot put a central line in yet until he is fever free and with a negative blood culture otherwise they risk introducing more infection into his bloodstream which would not be good.

Isaiah has been feeling wonderful. He has gone a whole six weeks without a cycle. I am thrilled. Went to his school meeting and I am in awe of how smart this kid is. Everyone absolutely loves him (how could they not). He is using a portable computer to communicate and doing very well. Hopefully in the next yr. he will be able to fully communicate with us. So exciting.

I set up a social worker from the hospital to speak with Janessa b/c we have been noticing her OCDs are getting worse and we are worried she is having difficulty coping with our crazy life. She is worried that Avery is going to die. Sad face. So when I told her about the SW(poor thing) you would have thought she hit the lottery. She is jumping up and down and was begging me to call the girl to move the appt. up. She was so excited that it was not for Isaiah or Avery but just for her. She even said "good b/c nobody knows about my life". So this will be really good for her. Janessa will just be telling all of our business. LOL.

Prayers are needed for my little man that he will keep his IVs for his meds and have no further infections. ALso pray for our little friend Eithene as she is recovering from a 14 hr. surgery. Please pray for a smooth recovery.

I will not be able to post for a bit. If anything major happens, I will have Rick post for me. He does a good job filling in for me. You can call me if you'd like (don't feel bad) if I don't want to talk then I won't answer or I just may be busy with little man. Thanks for all the prayers and kind thoughts. Love to you all..

Update on my little man

So off course what should have been a short stay will turn into another 2 week stay. Ugh, Ugh.
We still have no idea why Avery was so lethargic on Monday and his heartrate was so low. Some drs. think it was from the increase in clonodine (med) and the other half think it was a seizure. Who knows but certainly it is very frustrating. So by Tues. he is alert and looking really good but then he starts getting junky sounding and everytime he cried which was everytime I left the room, he would drop his oxygen levels and turning blue. So pretty much I was bound to his bed for the next day and a half. Still no explanation from the drs. Just more of me suggestions things. Wed. he starts with 102 fever which would not go down at all. The ended up using cooling blankets to get it down. Today some of his blood test come back and apparently he is brewing a blood infection requiring IV antibiotics which will require about another 7 days. UGH, UGH, UGH.

Man, this is just REALLY getting hard and frustrating. Since December we have not been out of the hospital for more than 3 weeks straight. That is really sad. Problem is, is we really have no control over it so we have to just go with it. I just want this boy to start getting well but it does not look like he is on that path at all. Next week we are meeting with Pallative Care to take about his "Do not rescuitate" or "Full Code" status. I will tell you, I would have never thought that when we decided to have kids that we would being talking about this a month before Avery's 2nd birthday. Just really heartbreaking. Some days I think, what if he dies today, will I be able to get out of bed. The reality is that I will b/c I have 2 other kids and a husband. Honestly, the more he is hospitalized, the more it is a reality for us. It is just a matter of time that my little guy will not make it home.

Next weekend is Rick and I's 1o yr. anniversary. Did you know that 85% of marriage with special needs kids end in divorce. Rick and I have 2. Guess we have beat those odds. We are scheduled to go away for the weekend, thanks to another angel. Please pray that we are able to go away and Avery is home and well. I hope I did not make you cry, it's just what is inside of me.