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Sunday, December 28, 2008

Looking Good!!

Joshua is doing much much better. His seizures have decreased. He is still struggling with a lot of secretions, but I am thinking it may be that he is teething and it is overwhelming for him.




Saturday, December 13, 2008

Get Well Soon

Joshua is no longer struggling with the flu.....it is now pnemonia. I took him for x-rays on Wednesday. He kept getting really high fever off and on. He is doing a little better now. So far he hasn't had a high fever these last two days. I just pray it clears up soon and before he is scheduled for surgery. If it does not, they will move the date again. Yes, he continues to throw up. These are the holidays right? I need a break......Joshua needs a break. Pray for my sweet baby.

Thursday, December 4, 2008

Change of Plans & ER visit

Well they called me and said they can't do the fundo until December 18 because they didn't realize they had over booked and Dr. was going out of town. GREAT! Like we can really wait. My poor baby has to hold on longer. The first thing out of my mouth was "I hope he doesn't end up in the hospital before then". Well, guess what we did! sort of...

Yesterday afternoon he had 103 fever. After I gave him all his treatments, meds, and cooled him off his fever came down. Thank God. So I thought we were in the clear. Then this morning I wake up and he has 104 fever. His breathing was also labored. I took him to the ER and spent practically the whole day there. They then told me he had the flu (was told it is type B: meaning cough and fever). The doctor said that since his breathing had gotten better and seemed pretty stable he could come back home. We just need to keep monitoring him closely because it can become very serious considering all the stuff he's got going on. I am so sad he has the flu. My poor baby. He goes through so much. He looks miserable.

Here is the run down of our week:

Monday-labs/blood work to check levels (meds)

Tuesday-Gastric emptying test (passed----although test was done differently than what his regular feeding routine at home is-- I can't help to wonder is it a true accurate picture of what goes on in his tummy?

Wednesday- pulmonary appointment/GI appointment/Radiology: x rays (YES we were there all day)

Thursday- ER all DAY

*****so I almost think he might have picked something up from the hospital since we have been there so much this week!

Tuesday, November 25, 2008

Keep it Going

Well it isn't an allergy to the milk. So now they are giving me two options:
1.GJ tube placement 2.redo fundoplication. I am not doing a GJ tube so my only option now is to go back into surgery and redo the fundo. I'm not to crazy about taking him back into surgery. I just feel like now we are backed up into a corner and I really need to do something to help him. He throws up so much! It is hard seeing him go through it. It comes out of his nose and his little face gets really really red. It then affects his breathing and he chokes on it. I hate it. The only other thing I have decided to do is have a Gastric emptying test done before the surgery. I'm a little concerned because at night he seems to throw up at around the same time every night. It also seems like it is a large amount compared to how much he is getting fed at night. I just want to make sure I've covered everything and haven't missed anything. We will do the test on Dec.2 and then on Dec.5 he will go into surgery to redo the fundo. They have told me he will be admitted into the hospital afterwards for a few days because of all his issues. They just want to monitor him. As far as his seizures I've called to try to rush the ketogenic diet. My heart breaks every time I see him have these seizures. He has them all throughout the day!!!! They also seem stronger. It is so hard to see him trying to stand, hold his head, etc.....then the seizures sneak up on him and screw it up. So this Friday after Thanksgiving I will pick up paper work for blood work to check his med levels. They want this done before we start the diet. I feel like a mad woman trying to fit everything in and get everything done quickly.

These last couple of weeks I feel like I am always on the stinking cell phone. I have been calling people left and right. I sometimes want to throw it out the window. I've been calling doctors left and right. I've been scheduling, rescheduling, notifying people about what is being done, med changes....blah blah blah!!!!!!!!!!! It seems like forever for some offices to call back so I turn into one of those pestering parents that calls back until I get things done. So, finally I feel like I've got things moving along again. I haven't had a full emotional melt down yet. I've had plenty of bad days though. Then when I feel like I'm going to let it all out I shake it off and think to myself, I have to keep it going no matter what...for now. I really need to stay focused right now. We have very busy weeks up ahead.

As a matter of fact we are currently in San Antonio. We are here getting him 6 hyperbaric treatments. We left Corpus Christi late Saturday night and got here at about 3am Sunday. Monday thru Wednesday we will have two treatments a day and then go back home for Thanksgiving. I wish we could do more throughout the week. However, I am very happy we could squeeze these in this week. So by the end of the week he will have had a total of 55 hyperbaric treatments. By the way, those of you who worked so hard with the raffles and helped us, this would truly not be possible without you guys. The only reason we are able to do this is because of your caring hearts and the money you raised for this. I thank you so so so much. I will keep you posted.

OH, Happy Thanksgiving & may the Lord's blessings be upon your families!

Thursday, November 6, 2008

My strong determined BOY!! Halloween 08 pics (physical therapy)

Even though he continues to have seizures, Joshua remains determined. After coming back from his last session of hyperbaric therapy he has shown even more progress. I know it has also helped that we have taken him off some of the many meds he was on. He has better head control and even wants to stand now. He has also been moving his legs in the crawling motion. Joshua continues to be our miracle!

Keep us in prayer for the following.
The next thing we are going to try is the ketogenic diet (for the seizures). He also continues to throw up and will be getting an endoscopy done to see if there are any allergies to the milk. This will be done on Nov.11. After this I will make my decision whether or not to take him back into surgery.



Sunday, October 12, 2008

Healing Hurt

As I was trying to sleep tonight I can't keep my mind from thinking about the sweet little angel Kaden. My heart aches and I can't seem to control my emotions right now. I know he is no longer suffering. He is now having the time of his life probably doing everything he didn't here on earth. How Great, I think about him playing with the other angels. He's walking along holding the lord's hand as he swings his little arm up and down just like father and sons do. He is probably right now taking in all the beauty the heavens have to offer. What a comfort to know the peace that he may be experiencing, finally rest. Yet, here we are on earth hurting for him.

I was thinking about when Joshua was born. It almost feels like we were minding our own business living our lives and all of a sudden I was stabbed in the heart. At first it hurt a lot and I felt everything. As time went on I still felt it but was able to still tolerate it. Still certain days I realize it is there and feel the pain all over again just like it just happened. This happens sometimes when the little things trigger it (like other children Joshua's age). I'm ok though. I just get over it and live with it hoping I guess it gets better. Now I think about those I've met who have lost thier children. After suffering so much, I think about how they might feel. Even though they know their child is in a better place. Does it feel as though someone finally took the object out and they are now just with an opened wound, hurting??? After time passes, does the wound close and you are just left with the scars of memories or the hurt you carried for so long. Does the wound close but at times you still hurt it accidently and it bleeds? I know the lord heals all wounds, but I also know we are human. It can seem like a lifetime for us to sometimes feel like we reach "understanding". Lord, be with all the mothers who hurt tonight. Whether they are struggling through a loss, struggling with thier childrens illness, or just struggling to live day by day.

More HBOT

We just got back from getting more hyperbaric treatments. We spent a week in San Antonio and Joshua recieved a total of 9 treatments this time. So far he's had a total of 49. Since getting the first 40 he has shown progress. He is crying now and showing us new movements. His therapist are very impressed with him. We've also had some of the specialist comment on how "good" he looks (very alert). The only set back we've had is he is still throwing up and his seizures have increased. They took him off of some medicines and that is when we saw the increase. As far as the throwing up, I don't think the fundo is tight anymore and am planning on seeing the surgeon again. He might need to go back into surgery. I'm very pleased with his progress, I just wish the seizures would stop completely. He now cries when he gets a really strong one. I won't stop believing, praying, and having faith that somehow it will get better.

I've looked into stem cell treatment and eventually wanted to give him this opportunity. I've heard so many good things about it. As a matter of fact, I met a mother who said it decreased her child's seizures. I also read about another that totally stopped her sons seizures and also has improved his mobility. I am very encouraged. This procedure is very expensive. I will keep you posted.

Yesterday I recieved notice that my friend's baby went to meet the Lord yesterday. He was about 10 months old and he went with the lord in his sleep. He had many health issues just like Joshua. I am so heartbroken. The little angel's name is Kaden, please pray for his family. They are so dear to my heart.

Thursday, September 25, 2008

Forward Backward Forward Backward!!!!!!!!!!

The last two weeks Joshua was doing awesome! He was showing us new movements, hardly had to be suctioned, and showing off his vocal abilities (crying!!!!). So So excited!!! Then...Tuesday secretions increased and he started to spit up again. Wednesday seizures increased and then last night high fever! Here we go again. I am so freaken tired of this cycle. It feels like we are going back and forth. I have not been at my best these last couple of days because it is so draining. Also, these dumb glasses we are suppose to get have been such a headache. First we couldn't find them, then we were told we would not be covered, we then were notified we would, and now they said no again. I think today we finally cleared up the mess and we are waiting for the final OK. Still NO GLASSES yet. Again back and forth even with this! TIRED. Can't anything be easy? Even the things that ought to be easy aren't. Make Sense? I am getting ready for another appointment today (just came back from one)so here we go out the door again. Tony and I have been very stressed lately so please keep us in prayer...oh and of course most importantly Joshua.

Tuesday, September 9, 2008

Just another thing to add to the list?

He is doing a little better. If he doesn't stop throwing up by the end of this week we will need to see the surgeon again. He wanted to give him time just in case it is a virus of some sort. He is still throwing up though, randomly. Anyway, today we went to another appointment and they tell me he probably needs glasses. GLASSES??? So far, a couple of people say,"he will look so cute". OK, but it is just another thing to add to the list. I know I sound so negative right now. I just am having a really hard day today. Maybe it will help him with focusing.....blah blah blah.. Then again I got the speech also that it all has to do mainly with the damage that occurred at birth because of the lack of oxygen. I guess I need to shake it off today and tomorrow will be another day. I also didn't have such a great weekend either, so it doesn't help. I was around many little ones his age.....NOT HAVING A GOOD DAY. This is it for now.

Sunday, August 24, 2008

Lift Joshua in Prayer

These last two days he has not been doing so well. I was so excited telling people at church Wednesday how great he was doing. Then he wakes up Friday morning with fever and lots of secretions. I've been having to suction him a lot and he has been throwing up large amounts (should not be happening because of fundo surgery--but may be because he is sick). I hate this!!! Again a few steps forward and now back. I just pray we don't end up in the hospital. So far tonight I've given him something for the fever again. He is finally sleeping peacefully. As of right now his breathing is ok, even though at times (especially when he throws up) I need to calm him down by suctioning or repositioning him. He seems to eventually calm down after I clear him up. If it gets worse or I don't see an improvement I will have to take him in. We have an appointment this coming week (Monday)and hopefully he can be seen then.

Tuesday, August 19, 2008

GET READY>>>>SET>>>GO

Well we are finally settled back home. I have been really busy getting our appointments scheduled and getting him back into therapy. He was re-evaluated by his physical, occupational, and speech therapist. All three have noticed a difference in him. PROGRESS!!!! He hasn't even had a full therapy session and already they notice a difference in him. I also took him to his pulmonologist and the first thing he said when he saw him was "wow he seems to be having a good day and seems very alert today". I then reminded him we had hyperbaric therapy and told him Joshua has been like this lately. I can't wait to get him started back into therapy, we are just waiting for all the paper work to go through (because we were gone for so long they had to discharge him and now need to admit him back in). Joshua has really been a little show off lately. Here are the things he has done:

1. first week or two after Hyperbaric treatments we were able to lift his arms and he is no longer as stiff as he was before (we couldn't lift his arms or bend them because of cerebral palsy)

2. more alert and almost as if trying to get in tune with what is going on around him

3. turns his head more...rather than just staying to the right (turns left and right especially when he hears people)

4. caught him tracking Tony across the room (followed him with his eyes--focusing)

5. is moving his legs in the crawling motion (placed him on the floor and used my hands to push himself around the floor--he is still very weak from his upper body)

6. has been trying to suck and actually latched on to my finger a couple of times

7. making more vocal sounds

8.moving his hands and arms (before he only did it when he was having seizures)

9. Seizures have decreased! they are not as violent as before (we would count at least thirty seizures in about 11 hours and now we only see around 6 small seizures!!!!

10. Stays Awake most of the day now! before hyperbaric he would only be awake a couple of hours and sleep most of the day. Now he sleeps through the night and is awake all day and falls asleep around 7pm (he will do this a couple of days straight and then the next couple of days will take naps)

I hope I didn't forget anything else...I am excited to see him doing these things. He is such a determined little boy. OH, yesterday I also moved him to the right which was away from the television and he started to make little noises like he was agitated, so I positioned him back and then he was content. I then moved him again to see if he was upset because I disturbed his tv time(no, he doesn't really get tv time--haha). Sure enough he made little noises again and slowly tried turning to his left (towards the tv)until he faced the tv. Little stinker wanted to watch tv! He looked so cute though because his little face was content and he was so into the television. I LOVE IT!!!

I definitely plan on going back for more hyperbaric treatments as soon as there is a school holiday or vacation time.

Wednesday, August 6, 2008

Quick update on the Raffle Winners

1st prize: Dr.James Caplin
2nd prize: Mike Riley
3rd prize: Laura Charo
4th prize: Elena Garza
5th prize: LaDawn Vaughn


Again, I want to thank everyone for all the support and prayers. We really appreciate you.

Friday, August 1, 2008

Faithfulness

We just need one more week of hyperbaric treatments and we will complete with the 40. We are on our way home this weekend and then we will go back to San Antonio again. Our raffle is on Saturday, August 2 and will be held 12:00 at B&J's pizza (the new shopping center CC,TX----Saratoga & Staples). We want to thank those of you who helped us through this. I pray blessings over you and your family. I also want to thank those of you who helped even when I called you last minute in a panic and you supported us by giving it your all!! I love you guys. I'm still waiting to see the final outcome. I hope and pray we get enough to at least make two more rounds. Today we have people selling the tickets that were not sold at Sam's Club and will be there from Noon-8:00pm.

Through all of this, the Lord has reveled many things to me. I have always seen the Lord's faithfulness throughout my life. However, even now more than ever believe it or not. I know he is the only one you can really keep your trust in.

Yesterday I felt such a huge burden in my heart. I don't know how to explain the feeling. As I was getting ready for a treatment, so many people came to mind (people I've met throughout different parts of the United States) and I just started to weep before the Lord. It was almost as if I felt the hurt, sadness, and desperation of all those people. I just prayed right there as I was doing my hair. I had a whole session with the Lord. The Lord showed me some things---it is not for me to share. I then began to think about how some people's priorities are so messed up. I don't even think they truly see it.

My heart breaks when I hear some of these people's stories. I have met so many amazing parents. Oh my Gosh. I watch these parents sit & wait outside of the chamber with such love in their eyes for their grandchild/child/wife. Parents travel from long distances just because they are not willing to give up or give into the medical diagnose. Such faith and hope. Some of these people are the most Godly people I have met in my entire life. It is so uplifting to hear their encouraging words or testimonies. Can you believe it---people who are facing the most in their life!!

Joshua has been showing progress. He has done a few things he has not done before and I know that after we add our physical, speech, and occupational therapy he is going to really show off for us. I am going to share some of the things he has done later, I promise. I am almost home and need to take care of some things first.

Sunday, July 13, 2008

ON THE GO------------Let's get things rolling






So far we've had a week of hyperbaric treatments done. We are going to get 40 by August 8. At first it was a little tough on our ears and extremely uncomfortable. It has gotten better throughout the week. I have been asked if I see a difference yet, I do notice a few things but will wait to share because I feel it is way to soon to say anything yet. Just continue to keep us in your thoughts and prayers. I will do my best to keep updates.

We are still trying to raise the money needed to receive these treatments. Our raffle seems to be going ok, however we still have many more tickets that need to be sold!!!!! We are not in the clear yet, as a matter of fact the price has been raised. Therefore we NEED to sell all the raffle tickets. Those of you that know you can help sell them please contact me.

Thursday, July 3, 2008

Back Home....just in time!

Joshua was discharged on Tuesday night. He is not fully recovered, however, we did come home with once again....NEW MED's. On a positive note, we got him off of one medicine. Thanks to my parents and Tony's parents we were able to pull off a birthday party the next day. It was crazy having a full day of appointments and getting ready for the party at my house. Thank the Lord it all went well. We had many people show up and we had a great time. I will post pictures later.

We are so happy to be home and I am extremely excited because we are able to make our first hyperbaric appointment on Monday (7-7-08). Continue to keep us in your prayers! I just know something miraculous will come out of all this. I will be taking our lab top with us so I can keep updates as needed. Thanks to the car wash and the firefighters union raffle, we are able to get treatments for the month of July!!!!!!!!!! I am so grateful to you guys and those of you who also gave of your time to support the fundraisers. Tony and I are still selling tickets for the raffle we are doing. This will help with the rest of the treatments for Joshua. I will keep you posted.

OH, I also have added two links for those of you who have been asking about the hyperbaric treatments. These links contain amazing videos of some success stories. Also, I was asked to give specific things that I want people praying for so here it is:

1. Seizures to stop

2. Cerebral Palsy
(this will help him sit, stand, walk, hold his head...better muscle control)

3. Complete Swallowing & ability to suck
(so he can eat by mouth--no more G-tube)

4. No more aspirating
(if he gets healed from #3 then this won't be a problem anymore)

5. Heal his brain
(no more abnormal activity--this will take care of his seizures,alertness-focusing-sight, movements....)

I guess these things pretty much go hand in hand. I wanted to tell you specifically the issues he is having. I also want to ask that as you pray for Joshua to include Joshua's little friend Giulianna.

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).

Tuesday, May 27, 2008

Outta There!!!!!!!!!!!

Joshua and I are at home!!! We are so happy to be back home. He was just discharged this afternoon. He is doing better and is still not getting fed as much as before. They will increase the volume in about two weeks. His infantile spasms also have decreased since starting a new medicine. The ones he is having now are very mild. So....now I have to get use to the new medicines he came home with. I hate having to give him so many!! His Neurologist wants to try to get him off of some of them, but she wants to give him time to recover from the surgery. We will see how that goes.

I made a correction on my last entry. The car wash is going to be on Doderidge and Staples. Just an FYI.

Keep praying for us, I pray this is only the beginning of what God has in store for Joshua. I know this is just merely a baby step towards Joshua's healing. I also would like to lift up in prayer Joshua's little friend Giuli. Please pray for the Lord's healing hand to be upon them. They have gone through so much already. I also want to pray for Giuli's parents. Lord give them strength in this very difficult time.

Friday, May 23, 2008

Staying Strong

Joshua did fine during surgery and is now completely awake. They waited a little over 6 hours to start feeding him. He is getting continuous feeds through his G-button and the amounts are very small. They are increasing it every four hours, slowly of course. Now we have to wait to see if the fundo works for him. If for some reason it doesn't, then they have to do the procedure all over again. I am so glad I didn't really get to see him on the ventilator and they didn't have a hard time taking it out. THANK YOU LORD! Just thinking about him on it made me begin to feel all those emotions I had when he was first born. I kept thinking it would be so hard to see him like that all over again and relive those moments of "not knowing". For those of you who have not heard of my ventilator story, about how the Lord heard my aggressive prayer and then miraculously removed it, I will tell later.

About the raffle, we have submitted our ticket order and are currently waiting. The prizes have changed a little bit. These are the prizes: 1st prize western Caribbean cruise for two/ 2nd prize $300 Lowe's gift certificate/ 3rd prize $200 computer pen with software/4th prize Motorola bluetooth ear set/ 5th prize $50 Two George's dinner gift certificate. I would like to thank our friends that have helped us out with donations and provided our prizes. Special Thanks to Comfort Travel Center, Endres Construction, Jarred Cassidy, Jesse Montez, and Two George's. I also want to thank Elida and Larry for the donated tickets. I appreciate our friends and family for all the support they have shown us through all of this. Another fundraiser going on right now is also being held by the Firefighter's Union. Danny Valdez brought our situation up to the Union which resulted in a raffle. They are raffling off gas cards. Thank you to our firefighters family for your efforts in helping Joshua. Also, Homer Sierra is putting together a car wash. So for all of you people that want your cars to be washed by a firefighter go to Walgreen's at Doderidge and Staples. It will be on May 31 around 11:00. I know there are so many more people I need to thank. Thank you all who are helping out with this! We really appreciate it. We love you guys and it means the world to us that you care for our Joshua.

I also appreciate those of you who leave comments on our blog, text message us, call, visit at the hospital, and have helped with our boys. It lifts my spirit to know you care. It also shows your thoughts and prayers are with us. Tony and I are also very lucky to have such wonderful parents. The BEST Parents in the world! They have helped out so much. It is so hard leaving our boys, but it helps to know they are always in loving hands. Thank you to our parents for being there for us in this very difficult time.

Thursday, May 22, 2008

And The Waiting Begins

He is in surgery. They took him in at about 1:00PM. Gave him lots of kisses! I was fine until they took him. I am still nervous and scared. I do feel at peace though, weird huh?! I can't explain it. I told someone today, I know God has control and the plan. I just hope it is the plan I want (ha ha). Tears, tears, tears, but I know it's ok. I hate waiting....the waiting game.

Wednesday, May 21, 2008

How Much More???

Ok, Joshua had been doing fine. We were just waiting around for the day of surgery to get the fundo. Then out of no where he aspirates horribly. We could not get his breathing and heart rate under control. His heart rate was at about 207!! It was so scary for me to see him go under such distress. I found some way of keeping my composure and was doing ok for a while until it finally hit me. It hit me when a nurse complimented me on how "strong of a mother" I supposedly am. I know the only strength I have comes from the Lord because at times I don't feel as strong as others might see me. Anyway, they sent him to ICU and he is there right now. He is pretty calm right now. The doctors are really not sure if they should go on with the surgery because he sometimes has a difficult time with his breathing (I think because his throat is swollen from the aspiration). If he does well tonight and tomorrow morning, they will proceed with the surgery. They are planning on doing it in the morning around 7:30. Please pray for us and especially for him. I feel so anxious, scared, nervous, and worried all at the same time. I know God is in control, but I guess my earthly human emotions kick in (not to mention he is my little baby boy). OH!!!!!!!!my precious little baby boy, if only.....if only....I just wish I could take it all away. He has gone through so much. OK, so I am having a really hard time right now. Not my best moment. I know I gotta keep going. He is such a strong little baby. How much more can I handle. I know they say God only gives you what you can handle...but oh my gosh...how much more??????

Tonight I looked up at the night sky and see the trees blowing in the wind. I see the little park next door. I just think wow, the Lord is the creator of all this. He is in charge of all that is around me....Lord I just pray you are so great. How much more can you do for my little guy. What is ahead? The Plan? For What? My life will never be the same. If only people saw what we see in and out of the hospital. The lives that are changed forever because of tragic events that occur. Such love, compassion, and hope I have for these mothers, fathers, and children. My heart hurts tonight. I know there are other hurting much more and facing much more. I pray for those. I pray for the little girl and boy next to my dear little baby boy. Oh, how I tear up when I see those parents and the hurt I see in their eyes. WHY? How Much More??? If only people knew....Lord be with my baby and all those little ones. Your love is so GREAT. I know you are still there. At this moment, I cry out to you and feel hurt. Heal tonight.

Monday, May 19, 2008

Pressing On and Moving Forward...

Looks like we will be here at the hospital till the surgery and then for recovery. It feels like we have been here forever! It's been hard seeing my boys going from place to place. I miss them so much, it breaks my heart not being home with them. My husband Tony has been doing such a great job with everything. I am so proud of him for being such a great husband and father. We will be going on seven years of marriage now, God is awesome. Sometimes I feel as though we've gone through more things in those seven years of marriage than people who have been married twenty years. One thing is for sure, every obstacle that comes our way has brought us even closer to each other and to the Lord. I love him dearly.

Despite how sad I may feel at times with everything that is going on with Joshua, I know the Lord is still watching over my family. I'm not sure what others think, but I could never be angry at the Lord. I really can't explain it. I get angry at the situation but never at him. We live in this imperfect world and only the Lord knows why he allows things to happen the way they do. This is merely just another chapter of my life. Believe me, I know he is all knowing----I still let it all out with him. At the end of my time with the Lord I always end with thanking him for every little step towards progress I see. I could not do any of this without him. I have many moments when my heart aches for my little guy. I then just shake it off and know I need to keep pressing on and moving forward. Keep praying for strength upon my family.

As far as the raffle, we are moving forward with our plans. We finally have all the prizes and are ordering the tickets today. Hopefully it doesn't take long to get them printed and we will start distributing them. Let me know if you are interested in helping us sell them. I want to sell them as soon as we can because I'd like to take him for treatments before school starts (Isaiah will be starting school and I don't want to go while he is in school). Here are the prizes: 1st cruise /2nd $300 gift certificate Home Depot/ 3rd $200 computer pen with software /4th $50 dinner gift certificate for Two George's

Friday, May 16, 2008

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.

Thursday, May 8, 2008

Surgery Scheduled

They turned off the oxygen today and he is doing fine without it. Tommorrow they will do an upper GI exam to make sure everything is ok to proceed with plans for the Fundo surgery. They also scheduled appt. with the surgeon on May 14. The surgeon is the same one that did the G-button surgery (that's about the only thing that brings me comfort). The actual surgery for the fundo is on May 22. So, I'm very nervous and scared. I know of people who have had this done on their babies and try to keep that in mind. They are doing fine and have said that it has helped their children for the better. However, everyone is different and responds to it differently. Someone came in to talk to me about the procedure today and we discussed all the bad things about it. I know God is in control of everything. I am still really sad and wish I could just get a quick miracle.
It's really wierd the way things work. Just eight days before Joshua was admitted we had our pulmonologist appointment. He told us we didn't need the fundo at that time because he was doing ok. He said his weight was still increasing at a good rate and he also pointed out that he had only been admitted once since being discharged from the NICU at birth. So...if there were any issues down the road then we'd have to think about the fundo. Here we are a week or so later. Gosh, maybe it was God's way of preparing me in some wierd way. Like I said only God knows!

Tuesday, May 6, 2008

Still in hospital

He is doing a lot better but is still on oxygen. They spoke to me about a fundo. They've spoken to me about this surgery before but they felt that he was not in need of it at the time. Now that he's been admitted with this respiratory distress they feel it is the best option for him. The fundoplication is going to help with the reflux and keep him from aspirating the food (into the lungs). However, it will not stop him from aspirating on his own secretions (saliva). It should be better for him........I still feel horrible about him needing surgery. The Dr. said we will discuss it further when he gets better. I'm so sad that he has to go through even more procedures. Pray for Joshua. Pray that everything turns out for the best. This is all I want for him.

Saturday, May 3, 2008

Rough Week

My 5 year old (Isaiah) was admitted into the hospital on Monday and was discharged on Wednesday (won't get into details right now). So then on Friday morning Joshua wakes up with 102.2 fever which ends up at 103. As I'm getting ready to take him in to ER, Isaiah is complaining of pain and also needs to be taken in. Long story short...I take them both in and Joshua gets admitted. I not only have to deal with both my children getting sick and going back into the hospital, I also have to deal with getting treated like crap from one of the residents there. As far as Joshua...we are still in the hospital and they are monitoring him. He did have to be placed on oxygen. His lungs don't show signs of pneumonia yet (pray he doesn't develop it). He aspirates and this might just be the cause of his respiratory distress. It can also be that he is coming down with something (like a cold....etc.). FYI: The children that deal with so many issues like Joshua and have the problems like him usually get more sick than a child who doesn't have these issues. So......he should not be exposed to sick people (even if it just seems like a little runny nose). I just don't want to offend anyone in case it looks like I get over protective of him. This morning so far has been worse than yesterday. They had to deep suction him several times. He also got his fever back and was having such a hard time breathing even with the oxygen given. His heart rate was really fast and we couldn't get him to calm down. He also had a couple of different spasms (seizures). It breaks my heart to see him go through so much. Lord knows he has had such a rough start. As of right now he is calm and his breathing is stable. They also have decreased the oxygen. He sounds so so much better and is sleeping (he is so tired from this morning). As far as the seizures, he hasn't had them anymore. I was told that they were probably break through seizures because of the fever. I pray they don't come back. I am currently using Tony's laptop at the hospital so I will give an update as soon as I get one. Keep us in prayer! Pray for healing and strength upon our family.

Oh, as far as the tv, I haven't had word on it. I'm disappointed but we will continue with plans as soon as we get back on track. I also am so happy to have met our new friends (Vanessa, John, and Giulianna). The Lord has certainly put them in our path for a reason. Joshie's friend Giulianna is so cute! Keep her in your prayers as well (see link).

Saturday, April 26, 2008

Working on it..........Keep us in your prayers

Thank you to those of you who said you would help us. As of right now Tony's aunt found someone to donate the raffle tickets!!!!!! Tony is planning on purchasing a cruise to raffle off (like an $800 cruise) through his web site (comfort travel center). This will be first prize. Now we are just waiting to see if a "second prize" that we are planning to get will come through. Thinking about a tv. As far as the third prize, a friend said he would get us a meal for two. So we should get a word by Monday if not we are gonna have to do without the tv. I am just praying for this to go as smooth as possible. I will still need people to help get the word out and help sell or give me people to try to sell to.

As far as Joshua, I'm so so excited. Just yesterday he gave me a "real" smile for the first time. I am praying that with this therapy he will get enough strength to push him even more into the "right direction" and "awaken" his little mind even more. He is such a strong baby and so so determined. He has come such a long way........you just can't imagine how awesome it feels right now. At first he didn't even cry at all, not one sound. We waited so so so long to hear him cry and now he cries!! The other thing I've been praying for was a smile. I even prayed it would be my Christmas miracle and now to see his smile!!! God has his own time. I almost want to say "what if it is a fluke and just some random thing he did. Then I think, who the heck cares....I'll take any little baby step.....Thank you Lord. I can not express enough, the emotions I feel. Believe it or not ........even through all we've gone through I still believe GOD IS SO GOOD! Keep Praying for us, it really does help.

raffle for hyperbarics therapy

Ok, so most of you know what happened with my baby (if not read my blog). Anyway, he is having lots of health issues which I am not going to go into detail about. He suffered from lack of oxygen at birth and there was some brain injury because of that.This might be long but I just need to show you how God works sometimes.
I was at the neurologist couple of months ago and came upon the Dr. magazine. I end up reading about Hyperbaric Oxygen Therapy. It is used for those that have had traumatic brain injuries and have been deprived of oxygen (some other things also). Anyway, so I get really excited and all worked up telling my husband & in laws I'm going to move to California/Florida/or Wisconsin because I'm gonna get this therapy for him.( yes, for those of you who know Leah, we were already planning for me to stay over there with her and Tony could visit of course --haha--)Then I end up getting discouraged for many different reason.
Weeks later my brother in law comes out of no where and hands me a package of information he sent for (yes, he did this behind my back---gotta love the guy). So, yet again---excitement----then discouragement.
It then comes up again by a parent on cafemom. I pretty much by this time put it on the back burner and let it go.Now a couple of days ago I get a message from someone on cafemom asking me where I'm from ......turns out she is from Corpus and is going through the same things with her baby. Her baby is a month older than Joshua! Well without making this longer....she took her baby to get hyperbaric oxygen treatments and she went to San Antonio!!!!!!!!! It turns out San Antonio and I believe Dallas are the only places here in Texas that have it at this moment.
I strongly believe the Lord put this person in my path for a reason. Now, this therapy is not a fast cure of any sort. People have seen many results from it. I am not expecting a quick miracle (through the lord anything is possible though) but I do want to give my Joshua the opportunity to try this therapy. I am going to run with this full force and don't plan on getting discouraged this time.
The therapy consists of placing the child in an oxygen chamber and increasing the pressure of oxygen (not harmful). This is suppose to "awaken" the part of the brain that was deprived of oxygen. Some people have seen more alertness, eye sight improvement, smiles for the first time.....there are other case studies that have improved greatly (won't get into that). Honestly I just don't have anything to lose. I don't want to live thinking "what if..."
Here is how you can help us. We are thinking about selling raffle tickets of some sort. We need to raise money for this. It is not covered by insurance at all. It is expensive. He will need at least one round of treatments to start off. There are about 40 sessions for the first round. This means it will be at least about $4,000 for just one round (40 sessions). Then later on in the year we go for a second round of treatments. So, once we get the raffle going and straight out all the details I will need people to help buy tickets and possibly sell. If you can not help, please just pray. Prayer goes a long way!!!!!!! After all, my Joshua is living proof. I will keep you posted when I get more info. Thanks so much for your prayers, support, and love. I really appreciate it.

FYI: Comfort travel center is the website my husband currently has. We opened this hoping it would help bring in the income I no longer bring (staying home with the baby right now). Honestly, we have not really seen much out of it. We are thinking about maybe raffling off a trip from his website to raise the money needed for the therapy.

Timeline given to some of you after NICU & Updates

June 25--- --CPR & placed on ventilator

June 27------seizures stabilized due to medications

June 29/30--signs of kidneys functioning

July 8--------afternoon nurse reports ventilator un-lodged itself unexplainably causing decision for removal and nasal cannula placed.

July 9-------Joshua doesn't tolerate feedings through oral gastric tube

July 12------nasal cannula is removed and he begins breathing on his own & tolerates feeding

July 13 -----feeding tube is placed in nose to free up his mouth

July 14 -----begins to make noises with his little mouth

July 18------passes hearing test and Dr. reports liver is swollen but not a concern

July 19-- ---due to inability to suck, surgery performed for gastrostomy tube

July 24/25 --second liver exam shows no change, neurologist reports third EEG still shows abnormality in the brain but does show slight improvements

July 26------ Joshua shows little signs ability to suck......& Joshua COMES HOME!!!

**************NEW UPDATES ********************

August 11----Joshua discovers his voice!! first vocal noise (beginning of his cry)

August 27----EEG looks better than last (still spiked activity--seizure activity under control
w/meds)

Oct. 4------liver report looks better

Nov.16-----diagnosed with infantile spasms/EEG is worse than last because of spasms

Nov. 29----cardiologist gives good report, everything looks good

Dec. 22-23---admitted to hospital (meds cause lungs to be filled with secretions) & diagnosed with laryngo malacia

April 23, 2008------Joshua's First smile!!!!!!!!!!!!!!!

So, as of right now his lungs, liver, & heart are doing fine. He still has to be suctioned because of his swallowing & laryngo malacia. We are still working with his suckling. He is crying much louder now and more frequently. The infantile spasms have gotten better, we are still working on getting rid of them completely (changing up meds). He is also starting to pick his head up even more and his eye contact is better also. There are times where I catch him focusing on things/people. He will even track a tiny bit at times. His trunk is still weak but my little determined baby works very hard. At this time he is attending Physical Therapy, Speech Therapy, and we have just added Occupational Therapy. Keep Praying for him, he has come a long way!!!!!!!!!

Joshua's Story

This is mainly for those of you who don't know already. I have a 10 month old baby boy who is my little miracle baby. I had a very healthy pregnancy and have never had any complications. At the end of my pregnancy I had a placental abruption and had to be rushed to the ER. I had to have an emergency C-section because of so much blood loss and my baby's heart rate dropped to about 60. When he was born they needed to resuscitate him and I was told he was basically lifeless. I was also told if it had only been 5 more minutes, both of us would have died.
He was then placed on a ventilator for about a 1 1/2 week. During that week I was told he probably would not make it and we'd have to turn the ventilator off and let God's will be done (at this time he was not breathing on his own & did not have a stable breathing pattern). So many people prayed and I am so so so greatful for you guys! I get so emotional just thinking about it. It was such a blessing to see all sorts of denominations and all types of backgrounds coming together to pray for our baby. Believe me, if it weren't for the prayers Tony and I would not have had the strength. Don't get me wrong, there were many moments we had to break down and just crumble before the Lord. Then we would shake it off and go full force with our faith. GOD IS GOOD!!
WEll, I can go on and on..
At the moment we are dealing with certain health issues because of the lack of oxygen at birth. This is simply something that happened not something he was born with(just to clarify for some of you).
I strongly believe God is in control of it all and has a great Plan for his life. This is only the beginning of the healing process and am believing that it may take some time. We continue to see God's healing hand upon our precious baby. I am very determined to help him become the best he can be and reach his maximum developmental potential. Continue to keep us in your prayers.