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Wednesday, June 25, 2008

Hospital Birthday Boy

Well, it is Joshua's birthday today. It is official, he is one year old. We spent his birthday at the hospital. We have been here since Saturday night. I brought him in because he was having way to many seizures and was gasping to breath. His secretions overwhelm his little body. They tell me he will always have problems because his lungs are constantly being damaged from the constant aspiration. Basically because he suffered from lack of oxygen he has neurological issues. This causes him to have other issues and it all comes down to aspiration. So I was told that eventually and gradually his lungs will give out and just prepare myself for down the road (future). Happy Birthday??? Anyway, I'm not having a wonderful day like I thought I would. I thought I was going to be cheerful and had so many ideas of what I was going to do today with my boys for Joshua's b-day. Instead I find myself here with my little guy and my two boys visiting for a couple of hours. I'm trying really hard to not get tied up in all the emotional mumbo jumbo today. For the most part, I've been pretty strong these last couple of days. TODAY IS HIS BIRTHDAY THOUGH. I did not expect to be here.

My in laws brought cupcakes, a poster board sign, and balloons to have a little celebration with the boys. I really appreciate them making the best of it. I'm still trying to plan his birthday party and hopefully we can have it Sunday. I pray he gets better and we can go back home soon.

Thank you Lord for allowing my Joshua to be here with us a complete year. I also thank you for the progress we have seen even though it may seem as though we have many set backs at times. I pray for you to give me a fresh renewal of my faith, strength, and spirit. I know through all this your glory will be seen one way or another.

Friday, June 20, 2008

Roller Coaster Not Over Yet ??

His EEG showed improvement from the last one he had, but it also showed there is still seizure activity (more activity on the right side of his brain). I know I always ask for prayer, however, I would like for you to pray specifically for the seizure activity going on. I pray that we see only positive activity through both sides of his brain and all this abnormal activity showing up to be gone in Jesus Name. He is still having horrible seizures that look like spasms pulling him to the right side. I hate seeing him go through this. These last couple of days it seems like they have gotten stronger. He also seems to have the same infection (from aspiration) he had since he was admitted into the hospital. They told me they gave him an antibiotic that wasn't for the specific infection he has in his lungs. So now he is on new medication again. I hope this takes care of it quick. He is not doing well right now. He gags and chokes constantly. I had to pull over at the side of the road just to suction him the other day. This may also be the reason why he is spitting up. It also affects his breathing. I spoke to the Dr. and I'm going to keep monitoring him. I pray we don't end up in the ER again. I feel extremely drained these last couple of days....actually weeks.

Joshua's birthday is coming up on June 25. I can't believe he will be one already. His awesome therapist helped me take pictures of him for his birthday. I will post later. Even though I'm not feeling so great right now, I do have to thank the Lord for allowing Joshua to come this far.

Wednesday, June 11, 2008

Quick Update

Joshua's raffle tickets are now being distributed. We have many tickets to sell. If anyone would like to buy or want to help in any way please let me know.

His EEG has been moved up because he is possibly having a different type of seizure now. He might be having simple partial seizures. We finally got the infantile spasms under control and now he is having these. Please keep lifting him up in your prayers. The EEG is tomorrow. We have had already a very busy week. We have appointments all week! I am extremely tired right now.

He also threw up a little last night and the night before. Joshua even gave me a little burp last night. He is not suppose to do any of this because of the surgery (fundo). I was very concerned because I had been told that if the surgery was not successful they would have to do it all over again. We saw the surgeon today and he did not seem concerned at this time. He did say that if he does start throwing up often and it increases then I need to go back in. I pray that when we increase the feeding it doesn't get worse. I was thinking, should I be happy that I heard a little burp and he was able to throw up if he needed to? I mean these were the reasons why I didn't want the surgery to begin with. Who knows? I'm going to pray about it.

Please also pray for our little friend Giuli. She is not doing so well right now.

Thursday, June 5, 2008

Neurologist Appt.

We saw the neurologist yesterday and I asked her about his head growth. I was concerned because on our previous appointment the pediatrician told me his head was not growing at the pace it should be. Well, the neurologist said this usually happens with children who have had traumatic brain injuries. I did ask if it was also an indicator of what he may or may not be able to do in the future (development). She said more than likely yes. The reason is because in the beginning his head was not growing steadily because of the trauma. SO, she says he will more than likely have some developmental issues. I feel really horrible. Well, I know it's not like I didn't think he is going to have issues. I know it's not going to be like my other boys and everything is fine. It is just hard hearing it and thinking about it. On a positive note, his head is still growing though. I am just trying to think...well it could be worse and could've stopped completely growing. Oh my gosh, I just pray it continues to grow. My head hurts and at this moment I feel like just crying in a little corner. With my other two boys (Isaiah & Isaac) I never even thought about head growth. You just basically go into the doctors office, have them do their stuff and basically say "wow he weighs more". Then you go on your merry way. With Joshua it is completely different. I go to the different specialists office and just hang on to every word that is said. Yes, I do believe doctors can be wrong and all things are possible through Christ. Joshua is my little baby and it hurts to hear things that may or may not happen in the future. I am so sad right now. He is such a sweet baby. Even when I feel horrible he does one little thing that will make me smile and I just hang on to that moment. It can be the little yawn coming out of his mouth, the little stretch I see him make, when he cries for no reason, when he sighs like he is extremely bored or exhausted, and when he gets really stiff when he is upset because he wants to be held.

Those of you with healthy children, be thankful and don't take things for granted. Don't complain about the little things but be grateful for them. It is a blessing that your child crawls and gets into everything. Thank God that your child babbles all night long. When it seems like a headache to force your child to take medicine be thankful you have that and your child can take things be mouth. I'm tired. I don't mean to preach and sound like I'm feeling sorry for myself. I'm just tired and it hurts to think that the things that people complain about are the things I am praying to have. Keep us in your prayers. I know this is just a moment I'm having and please forgive me if I've offended anyone. I just ask for you to please pray for his development.

On a good note, his infantile spasm are doing better and in two weeks we will have another EEG (records electrical activity of the brain) to see if things have improved such as seizures. I pray for the best.

Oh, I also found a little tooth growing! Joshua is getting his first tooth. Finally! It is so cute, it is a front tooth (ha ha). He such a little angel. Things like this make me smile. I love him so much.

Monday, June 2, 2008

BLESSED

Our car wash was very successful. We are still working on our raffle tickets and hopefully we will complete our goal of getting enough for a month of treatments (God willing maybe even for more down the road especially if it proves to show positive results). I want to thank everyone that helped out washing cars, those of you who sent people our way, and those of you who gave so generously. I also want to thank Eric Ortiz for making t-shirts for the guys to wear. I was so touched with the generosity of everyone who gave and took part. We are truly blessed to have the loving support from our family and friends.



I also wanted to share how a little girl named Lani touched my heart. She willingly gave out of her own money because she wanted to help. As I drove home I prayed, even through this little girl you show me your love. As I prayed, I felt as though God's loving arms were stretched out towards me and felt the warmth of his spirit. I truly believe God revels himself through different people and situations. I pray blessings upon everyone that has demonstrated God's love towards us.

Today we opened up an account to be used specifically for Joshua. I am so excited to be off to such a great start in our fundraising. I pray for God's glory to be shown through all of this. Already I have seen such a big impact Joshua has made in so many people's lives. It is incredible to know my little baby is being used tremendously by the Lord. I will say, this has not been an easy road. There were many times I would tell the Lord, "but why can't you choose someone else". Don't get me wrong, I'd never wish this on anyone. I guess cause while he was in the NICU some people would tell me, "wait and see the Lord is going to use Joshua in a mighty way". I know one day and some how it will all make sense. All I know right now is no matter how hard it gets, I will trust him. This doesn't mean I will always be ok with it....I imagine the Lord looking down on me with a smile cause only he knows our little one on one sessions (ha ha).