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.