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

When? What? & WHY?

So I haven't had a chance to really sit down and post anything. Even if I did have one minute I don't think I would've wanted to anyway. This is how crappy I've been feeling lately. I know my last two posts have been very short and to the point. I have been going through so much "stuff" these last couple of weeks. So Joshua had three things done he had the fundoplication which helps him not throw up and a plication of the diaphragm. This plication was done because they saw that the left diaphragm was elevated and they believe it is paralyzed. They "tacked" it down so it won't keep shifting up and maybe can also move a little more by being tacked and movement of the right. This doesn't mean it is any better though. Along the way they discovered he had a hiatel hernia, which also is a reason for the severe reflux he had. He had all this done and seemed to be doing fine. Then the next day he was struggling with his secretions. It almost seemed like his little body was totally overwhelmed with everything. To make things worse, they weren't giving him his med for secretions (so it got worse). He then began having little episodes where he was choking on thick secretions and turning red/blue/purple. Then Joshua went apnic for a short time. They decided to intubate him because his lungs were full of secretions and they basically collapsed on him. I really think his little body got so tired and he just gave up. During this time I met a little baby boy and his courageous parents whom touched my heart. He has wonderful parents who held on to their faith till the very end of his time here. God bless his mom and dad.

I did visit at the funeral home which really made me think about a lot of things...

I get so frustrated thinking about how it seems like people who I thought were going to be supportive are really not the ones who are being supportive. I know for a fact the Lord does send me someone when I least expect it. I am so grateful and thankful for my friend Vanessa who truly understands me when I feel like I can't deal anymore. Then I get a renewed strength that will get me through another day. God knew what he was doing when he had us meet. NOW ONLY for the rest of our PRAYERS....come ON give us more celebrations to out weigh our tears and heartache. THIS To SHALL PASS?? When is this season over in our lives?? I know, have more faith. I do have faith believe it or not (even though I sound really bad right now). I've learned it is ok to express myself and get upset as long as I don't hold on to it forever. After all don't children cry out to their father? The Lord knows I do my share! OK Lord, I love you and trust you. It just seems to get harder at certain points to bear seeing my little one go through this. Where are all the Godly people that use to surround me?? I know they truly do not understand this chapter of my life. I almost think some people think "oh, it's just Joshua getting sick AGAIN---he'll be out and ok AGAIN." I even sometimes think family doesn't get it either. One day the Lord can take Joshua because he can get SO sick. Yes he is ok right now but who knows what the future holds. It doesn't matter how much faith you have...ultimately it is GOD's Plan that lays before us all. I just have to go day by day and know he loves me. Stay focused on him no matter how hard it gets.


Another update on Joshua. We went back for another hospital stay but this time for a sleep study. I have been complaining about how he has a really loud snore and it seems like his air way is collapsing. It just seems like no one listens! Thank God for my new pedi. He gave us a o2 monitor and oxygen at home just in case. He also set us up for the sleep study. Well, I finally got the results today. He will get admitted into the hospital after Easter on Monday because they found he has moderate obstructive airway sleep apnea. I was told he only sleeps about 50% and is not reaching REM sleep! My poor baby never gets real rest! So now they will get us set up with a CPap at night. This is basically continuous air given to him (looks like an oxygen mask but it is just blowing air using pressure to keep air way opened). It should improve his sleep and may even improve his seizures!!! even though it is going to add to our night ritual I am excited to know there might be positives out of this (or at least rest for both of us). The hospital stay is to assure he can adjust well to it and doesn't have issues before we begin at home. PRAY!! If Joshua is happy and gets rest--I get rest---if I get rest--everyone else will have a happier and less sleep deprived mother (haha)

Pray for the BEST!