Heaven

Joshua went to heaven on Thursday, July 21, 2011. I may or may not post later. I will do my best to post pictures when I can. So many things to do right now. I miss my lil baby so much already. I feel lost without him. I know he doesnt hurt anymore. The Lord is my strength and my guide.

Hernia Hernia Go Away!

WEll when he was in ICU they discovered he had again another hernia (from all the gagging). The only thing to do is surgery again but he is to much of a high risk to go under right now. We finally got him stable! However, he threw up twice last thursday. He also has been having more food in his tummy than usual. So this means at times he is not digesting everything because of the hernia (food is shifting everywhere). It is not a constant thing yet so not gonna go into worry mode yet. I really don't think we will do surgery unless he really isn't digesting 1/2 of his usual intake. This will then be a major problem. Pedi doesn't think he will get through surgery if he does go under. So yes we traded one problem for another in the mean time. Another thing that can also affect him is throwing up and aspriating on it (going into lungs). It's like one BIG CYCLE. We are going to see the surgeon in Aug. to discuss what we basically already know (haha).

On a good note.....he will be turning 3 years old on June 25!!! He has gone through so much in 3 years....gosh my baby boy is a super human baby. Thank you Lord for these blessed (although tough at many times) years of having time with my precious lil guy. I think about all the kisses, hugs, half smiles, and unspoken communication he shows us with those beautiful eyes. He is our angel. Thank you Lord for Joshua.

cruise control

so we've been seeing the pediatrican every week so he can keep track and monitor him. The last thing he said to us was we were on cruise control. In this he means he isn't getting better and isn't getting worse. However the last couple of days we managed to take him off oxygen and the cpap (blows air to keep his airway opened). He actually only uses the cpap while asleep. He is such a fighter...Joshua is superbaby for sure. So he actually looks better!!!! Will post later, it's Isaac's b-day today so we are off to celebrate (6yrs). Thank you for all your prayers. Just continue to pray for God's will...that is the only thing I pray for. Thank you again.

Sleep Baby Sleep

Well I really don't have a lot of time to post a whole lot right now. Joshua is still sick. He is currently on 3liters of oxygen and throughout the day on the cpap (looks like an oxygen mask but blows air to keep airway opened when he is having a hard time). We are doing treatments and doing everything like we usually do except we aren't on antibiotics. He has already tried 3-4 different ones and nothing really helped. So now we just wait and give him time. Hopefully that left side opens up and he clears up more. Right now he is needing lots of suctioning and constant monitoring. He does look more relaxed at home and rests more. He sleeps on and off throughout the day. So basically the key phrase I hear a lot from the doctors is "unfortunately we don't have a crystal ball" so Joshua can get better slowly or worse slowly. Well, at this point I'm just taking it day by day. I thank God for every day he gives me with him....whether it is days, months, or many years. However and whatever goes on I know the Lord knows best. This is what I am trusting and believing. My prayer is for Joshua to be happy and not suffer. Everything else will be taken care of by my Father in Heaven. So for now I am just letting him sleep all he wants cause he really needs to rest. Staying in the hospital for long periods of time really is draining. I know I haven't caught by yet and I'm not the one getting treatments and suctioned constantly....I can't imagine how tired he must feel.

Those of you who have been praying for us I thank you. I pray for strength, peace, and his Will. Another quick thing I want to address. Sometimes I think people want to be their for us, do something for us, or even say something to us. However, it is hard to figure out "what". I just want to say it's ok. Please don't concentrate on these things because sometimes these things aren't even the most important things that need to be done. The most important thing to us is to know you are there. Sometimes the best thing you can do is just listen. A recent thing I shared with a friend was telling them we are really not looking or waiting for the magical comforting word/words of wisdom. I think when people focus so much on these things it takes over and then all you have is avoidence. When it gets to hard for people they tend to just avoid the situation. In this case, I understand it is hard for some to see my little guy sick. Just having someone be there is the best thing.

As far as pictures I will have to post later.

Terrible Two?? Wonderful Two!!

Well, his birthday is coming up. We have noticed he is very vocal now and cries when he is not HAPPY. It is really cute to see him with his little tantrums. It always makes me smile to see him cry unless of course it is cause of a seizure or something hurting him. He also had his first dental appointment. He totally hated it of course. He put up a fight---way cute though. Funny how the little things are appreciated. Heatlh wise, he is doing ok right now. I'm not really happy about his seizures but he is not as bad as he has been in the past. He is now putting up a fight at night giving us a hard time when we put the cpap machine on him--little stinker.
These last couple of days he has been smiling a lot, especially late evenings. He hadn't really been smiling I guess because he wasn't doing so well with all that was going on with him.
I sit him up against the sofa and he loves it. He looks around and is so peaceful. Usually when he smiles it is at random times. However, two days ago he was actually responding to me. For at least five to ten minutes while playing with him (kissing his hand, talking to him, shaking his arm, and lightly rubbing his cheek)he was actually smiling and teasing me by turning his head towards me and away from me. I was so emotional just knowing that my baby was actually playing with me. It was such a GREAT feeling. At one point I got so emotional that he heard me and thought I was playing with him so he smiled even more. As I laughed and cried his smile seem to widen even bigger. SO So cute. It was the best feeling in the world. I just pray for more of those moments with him. It's crazy cause the day before I had just visited a friend who has a baby under the age of 1yr and it was hard seeing his interaction with others. I tried to get over it and was actually playing with the baby for a while and was making him laugh. It lasted for a while until I knew I "hit my limit". Then the next day the Lord gave me this little miracle. A little bitter sweet though. I pray this is just the beginning... another step

AGAIN!!!!!!!!!!!!!

Joshua was discharged from the hospital on Friday May 9. I had to bring him to the ER because he was gasping to breath and I could not get him to slow his breathing down. He has been like this off and on since Saturday but he was able to snap out of it. I figured it was because of all the suctioning we have to do. I did call his pulmonologist Monday afternoon and took him in to the Pediatrician on Tuesday. Then I brought him in to the ER on Wednesday. He was admitted Wednesday night and here we are again. I know a lot of the nurses now and Joshua's name has become one of the well known names around here (gotta have a sense of humor at times otherwise I'd be an emotional mess 24/7). They are thinking it might be a combination of his reflux, aspiration, laryngo malacia, and I think all the nasal suctioning with the catheter made him swollen. They did confirm that the inside of his nose is swollen. I am thinking that when they suction him he gets overwhelmed and tries to catch his breath but has trouble because his nose is swollen. Anyway, that is my own little diagnoses. They did give him some oxygen last night but they have turned it off. He was in distress for a little while because they had to deep suction him again. I already told them---NO MORE DEEP SUCTIONING unless it is absolutely the last resort to relieve him from distress. He is resting right now, my poor baby is exhausted from all this mess. I hate seeing him poked constantly, being given all sorts of drugs (medicines), and I hate to see my poor baby's expression on his teary red little face because they keep suctioning him. I'm still scared about the surgery but I wish they would hurry up and get things going. I just want him to be ok already. I'm so so tired and I miss my other boys so much. I feel really bad about not spending time the way I use to with them. I feel as though my whole world has been flipped upside down. WHY? FOR WHAT?
I've met so many wonderful people out of all this. I'm talking about all the parents that have gone through the similar emotional roller coaster we've been on these almost 11 months now. There is such an indescribable bond between us. If only some of you could hear the many stories out there. Parents/Children with unbelievable stories of survival, heartache, and great strength.