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!

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.

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).

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.