Joshua...God's Warrior

Christmas Message to Mom

2011-12-10T15:28:00.001-06:00

Christmas? Really!!? Is Christmas really happening this year? It is coming even though our Joshua isn't here! Well, yes everything is currently in motion right now. The trees, the lights, the music, the sappy movies, and of course the cheer in all of it's glory. OH my goodness, Lord give me the strength to be in the spirit. The good thing is I don't have to be in "the spirit of Christmas" but do need to give God all the honor and Glory. As far as the jingle bell songs on the radio....my instant reaction is to flip the station or turn it off...lol. I use to love all the Christmas stuff in the stores and everything that goes along with it. It just makes me sad right now. I'm sure it'll get better but for now I'm just taking it one step at a time.

We decided to ask the boys whether they wanted to have the "real tree" like we usually do in our living room or just put the smaller artificial one we had in Joshua's room last year. Isaiah (our 8yr old) said it didn't matter to him. However, the discomfort in his voice and watery eyes said something else. He admitted it was hard to talk about it. Isaac (7yr old) on the other hand, said he wanted everything the same as the last Christmas we had with Joshua. The artificial one he said reminded him of our last Christmas and of Joshua cause it was small like him. The real tree is where "Santa" always puts Joshua's presents under. So we said ok, it settles it and we will have it that way.

As we began to put the tree, I wept softly enough for them not to notice. I wiped my face each time I'd reach into the ornament box and decorated inside our home. The hardest was pulling out Joshua's ornaments. So many memories. I kept thinking he should be here. I really didn't want to decorate, but my boys I think needed it. I don't want them to have to many changes. Then as we sat on the floor in Joshua's room to put the artificial tree together, it just broke me. It tore me up to sit there knowing his room was still filled with all of his things and everything in it's place....except for my baby boy. The bed and sofa seat were empty. I wasn't siting there holding him watching the boys, there wasn't a nurse sitting there taking care of him, nor was my mother in law there to help watch him so we could get things done. He wasn't there. Joshua was not there with us. I had an emotional melt down. I began to sob uncontrollably in front of my boys (which i rarely----and I mean --rarely DO). So my boys began to cry along with me. As I try to compose myself, I began to tell the boys how I believed Christmas was Joshua's favorite holiday. Thanksgiving was always hard going back and forth from home to home. He could not handle it and hated being in his car seat for long periods of time. On Halloween, it was hard for him to be outside late at night and go also from home to home. Christmas though, he loved to be indoors and being up late as he listened to all the family commotion. After saying this Isaiah said something that seems so simple but yet so profound. Isaiah looked at me straight in the eyes as we sat there (still watery eyes) and said to me...."mom this will be Joshua's best Christmas ever cause he will be in heaven and celebrating God's very own birthday with him".

WOW....I felt as though the message was clearly sent from the Holy Spirit through Isaiah. He didn't hesitate in speaking in such a loving and comforting way, it feltl as though the message beamed with a sense of Godly authority. I then began to cry all over again...(haha) because it was awesome so see and hear my 8yr old speak this way. I know the Lord is going to use him in a powerful way. Pray for Isaiah...he is so tender hearted. He has also been emotional these last couple of weeks and is missing his little brother so much.

When all you can do is SCREAM!!!!!!!!!!!!!!to the point of exhaustion

2011-11-21T14:26:00.001-06:00

My heart is heavy. I feel like I can't breath. I feel as though I just want to go to Heaven for just a little while just to see and hold my Joshua. I say just for a day or couple of days cause I know my little ones need me here. I think sometimes and pray.."Lord can't you give me this". Please somehow answer this prayer and make a way. It hurts way to much. I've experienced that I do fine for a few days or even a week. Then its as a strong storm crashes me down to the pit of emotional hell. I know it sounds very unchristian of me. WHATEVER.... it's real, very real. The Lord knows and understands the pain I'm feeling. I don't care what others think. It's important to know that Christians need to be real. This is definitely Real. There are no "Christian comforting words" to a mother that is just simply hurting because of the loss of her child. Many see me as a STRONG woman....blah blah ....however, at this moment they should see me as I post this. I'm a wreck! A complete total wreck to the point of asking myself "am I going crazy"? Then I think to myself, I'd probably be crazy if I didn't have these moments. I'm a Mother.

I've had people try to give me their comforting speeches which I know they mean well. Then I have those who say "they understand" "they know".....God... that is one thing I can not stand. Lord forgive me. I am so tired of the stupid things people say. I'm just TIRED. I'm TIRED of being Tired. People need to understand I know "all those things....he's in a better place...etc....". It sounds bad, but I also wouldn't wish him here again to hurt. It would be selfish of me. I just want to at least visit once a day with him in Heaven. CRAZY woman you are probably saying to yourself. Its hard to understand unless you've seen everything he went through.

So the best time to let everything out is when I'm home alone. I don't want people thinking I'm crazy. When you are home all alone you can scream, hit things, and just throw a huge emotional fit. I ran to his room the other day and just searched for his scent. I even opened up a can of his milk just to smell the milk on me. As I am doing this I start to think "I still have enough wipes, powder, diapers, even supplies...I go through his supplies to look to see what he has, as if though he was still here with me physically. I then pray....Lord I still have enough stuff and am not even out yet. How could he not be here. It doesn't make any sense. As though he wasn't suppose to take him yet from me. Then I randomly found his therapy vest and just thanked the Lord cause it smelled exactly like him. It was so heavenly.

Oh my God!!!! LORD help me Please.....I just don't know about this horrendous feeling that goes through me like a sharp piercing pain into my soul. JOSHUA JOSHUA JOSHUA my LOVE. You were and are everything to me. For four years nothing really mattered as much as you did. Everything in my life was dedicated around YOU. Even when things weren't going right around me. It didn't matter cause I just relyed on you. At the time it seemed as though you were relying on me for everything that kept you going. Now as I look back I relyed on you just as much. I just didn't know it. JOSHUA!!!!!!!!!!!!!! I can only yell out your name because I LOVE YOU DEARLY and MISS YOU with ALL of my being. Then I call and cry out to GOD!!!!!!! LORD HELP ME.......Heal my soul and heart. LORD......LORD....

I'm sorry I'm rambling. I'm just having "THAT DAY" right now. Just yesterday I wrote in a friends facebook...."been there to many times. I'm sorry. Now its a totally different feeling for me. It's hard either way. Feels like you're broken either way. Just know we are blessed just to have our angels even when it hurts the most. We love them with everything we've got forever and ever. They forever change our lives. A bond never broken." I look back and read this and it tears me up. It feels like we are so far apart, but yet it is true that my bond to Joshua no one will ever have. You don't know or understand until you've had such a wonderful and special child. I love all my children. They are all wonderfully uniquely made. However, my Joshua is my Joshua. Those of you who have a special needs child understand what I'm talking about. It 's like when you take care of your children and they are sick. You spend all your time with them and give them that one/one. You hurt when they hurt.....you nurture them. Joshua since the beginning was sick. SO he got my one/one for four years of his life. His life became my priority. I still made time for everyone else....even then I always was checking in on my Joshua or taking care of "Joshua stuff".....(this makes me smile). The moment he needed something or I knew he was having issues, it didn't matter where I was or who I was with----I'd leave and go to Joshua. (this makes me laugh)....He was my little man. If I was upset with someone or about something I'd focus on ....."it's ok....I love you Joshua.....I'll take care of Joshie nothing else matters".

Holidays are approaching and I really don't feel like I'm in the mood. I don't want to decorate or do anything. I feel as though it'd be wrong to celebrate without my baby boy. I don't know. The Christmas stuff at the stores and the music always were my highlights. Now I just get so sad. It makes me feel empty. I feel loneliness even though I have my husband and boys. I'm gonna make myself still put something up at least for my children's sake. I just don't know if I'm gonna go all out. If we decorate I'm gonna find a way to tie it to a memory of Joshua somehow. My husband wants to place angel wings at Joshua's window. I think that will be beautiful. We'll see.

Thank You Lord for your continual faithfulness in my life. You continue to be my everything. I am nothing without you. You sustain me through and through. Thank you for my gift.....my husband, my kids, and four years with my Joshua.

Missing My Baby

2011-10-03T11:49:00.001-05:00

So just when I think I'm doing pretty good....bam...bam.. pow.....hits like a brick right in the gut. I know I'm okay and will be okay but geez right when I turn into the corner of life it hits you right in the face. I woke up the other night around 2ish 3ish in the morning. Had a crappy dream. Well, I guess it isn't crappy when you aren't in the moment and actually step back to take a real look at it. I woke myself up crying and with Tony trying to comfort me. In my dream I had talked to this "person" and decided to give this "person" Joshua because I was just so so tired. This person was a person somehow related to church. I then went about my business. I slept and rested for a while and when I awoke (in dream) I was frantic and in a horrible panic. " I gotta get Joshua back!!" Oh My God! What have I done! Running to church to look for this "person" and can't find him. Yelling I made a mistake, I didn't know what I was doing. I was just so tired but I'm okay now. Please! I need Joshua. I can't do this without him. I'll try to get more help or get his nurses back...I NEED JOSHUA!! I couldn't get him or find him. He wasn't in reach. Then I just heard this person, who I never saw the face of, say to me ..."this is for the best". I then woke up. I know this is probably a representation of giving him over to the Lord. Also, as I think about it---it wasn't so much just me being tired but Joshua being more than tired.

We ordered the headstone for his "area" so I think this also makes it very hard right now for us. I feel it so strong right now.

Today has been also a really tough day.

How are you doing?

2011-09-15T13:15:00.000-05:00

So much has happened and now what? Where do you go from here? Taking care of "his area"....check...."water his area"...check....."put together a head stone for Joshie"....almost check......"cut the grass from his area"...check....
(so as you can tell I just call it his area instead of his burial site, cemetery, or "Joshua"....etc...in a way I just think of it as an area we purchased in memory of Josh. It's like we bought a little area for a garden. I know it's weird but I rather think of it like that than to really think about his body actually being there ---so for now it's just referred to Joshua's area. No, I'm not in denial. It's just that if I really think about it and make a deep connection to his body being "down there", I or should I say my earthly mind will want to tell me I need to take him out because how can I let my baby be down there. It is a mother's instinct to take care of her child and keep the child at sight at all times. This is where I think my feelings come from. For me as a mother, if I dwell on the whole process of burial......it makes me want to feel as though I can't breath. Even though I know he is physically gone, I cannot fathom my baby boy being there. Again, I'm not in denial. I was told by another mother that lost her child...."maybe it's our coping mechanism the Lord gives us" .....I think maybe it is as Godly Christian mothers. I say that cause I can totally see where others could lose their minds or seriously shut down. He is in Heaven and I've got my focus on the Lord. Thank You Jesus.
As I was saying before, I have this thing now that I or we(tony included) are doing now.  Which is? lol....I guess in a sense taking care of Joshua's Stuff.  However, then what happens from there...who knows. Well, at least I think everyone else is still moving along with their schedules and activities. Tony is back at work. The boys are still doing activities and now back at school. ME? huh? Well, I don't know. Like I said before....."taking care of his area"...check...."water his area"....check...."housework"...check...------------Then there is emptiness.

Here I thought I was prepared for life. Live for the Lord. Always keep him in your life. Try to make the right choices.  Make sure you finish school....go to College. Have a career. Get married and have a wonderful family. Okay, so I'm not mentioning all the highs/ lows in which are part of growing up. My point is that I did all that and then POW!!!! I was a person with a bachelors degree and no job. Joshua became my priority in living my everyday life (plus my daily family living of course). He totally consumed me and my everyday rituals. Now, I'm left dangling in mid air.  What now? I pray cause I have ideas and goals but I feel lost. How can you feel all these things at once. I feel REALLY Lost. It almost makes me feel as though I don't have confidence in myself for some reason. I know I can and am capable of getting things done but I guess it's because now it's time to combine what the Lord has taught me. I know I can do things and I plan on it. I just want to go the right path. I pray for complete guidance.

Sometimes I feel as though I just don't have enough to do with myself. Nothing completes me or should I say completes my day.  I know everyone will say..."The Lord"....etc. However, there is a different feeling that exists that is unexplainable. Yes, the Lord does heal and is there to fill my void. It is very evident he is faithful and is my everything. If it weren't for him I wouldn't be existing right now this very moment. The heaviness and emptiness comes from a "mothers hurt".  Just like when you pray for your children and you give it all to the Lord.  Then you still call to check on them to make sure to see how things are going.  It's not that you haven't given it to the Lord----you are just being a mother. Well, that's the best way I can describe it. I Miss him so much!  That empty feeling feels really heavy inside of me.

The wonderful part of it all is when it becomes unbearable, the Lord makes his presence known. When it hurts so much that I pour out to the Lord with everything I have to really tell him what I am feeling, he gives me peace. When all that is within me just melts before him and I am just broken at his feet....he sustains me.  There have been times when I go to church and he fills me with joy. So he is my everything and he does fill me. This is just a process. I know that this also has a purpose in the Lord's Plan. I love when our Pastor Don Leavell quotes Psalms 23 and says "you walk THROUGH the valley".  The Lord walks you through many valleys. He never said you wouldn't go through them. However, he is there walking you through them. "Thou art with me".
Awesome! Isn't it great when God's word comes alive....Right in your face...lol.

Keep me in your prayers.

To My Dear Precious Son

2011-09-14T00:43:00.000-05:00

This is the letter I wrote and read at Joshie's service.

My Dear Precious Baby Boy Joshie,

     As I sit here in your room, I can't even begin to understand the idea of not holding you again. You are so Loved. I'm not sure how to feel at this moment. I feel so relieved that you don't hurt anymore, but my heart aches and longs for you. I don't know if I can bear not having you with me or not having you here to care for. All I've known for four years is to take care of you, make sure doctor appointments were set, nurses & doctors understood you well, and most of all Love you so. You are so Loved.
     From the beginning, you were full of surprises for mommy and daddy. I remember the day you were born. It was scary for mommy in the ER, not knowing what was going to happen to us, but most importantly to you. I prayed the entire time, "Lord protect my baby, protect my baby, protect my baby." The doctor said 5 more minutes and we both would've gone to Heaven. That wasn't God's plan though. His plan was bigger than I could've even imagined. You are so Loved.
     I'll never forget the time you were about 11/2 week old and they told mommy and daddy we'd have a family meeting the next day to remove your support. I prayed so boldly over you that day and the Lord answered prayer the same day. The Lord's plan was Great. The whole time everyone said, you were not responsive, I knew it was because you were to busy playing with the angels and holding God's hand. The Lord saw what a huge impact you'd make and knew it before he sent you into my womb.
     Oh my, I remember all those different people, pastors, strangers, friends, family, family of family, and friends of friends. You name it...people joined together to pray for you. It didn't even matter what religion or what church they belonged to. You were God's instrument to show, One Mighty God, we all from the same family. Slowly you'd give daddy and I signs. Signs like the little twitch of a foot or curl of a finger. Oh my! what an awesome feeling to see you do these things that seemed so small, but yet mighty miracles in our eyes.
     You taught us how to appreciate life. You showed us how some of the stress of this world is not so important. Through the Lord you taught us to be more compassionate for others. It is amazing how every person you touched was touched in different ways. Family, friends, doctors, nurses, neighbors, and strangers----they all loved you so. You are so loved.
     As you grew through these four years, so did we. The road wasn't easy, but the journey was God's plan. What a strong little mighty warrior you are. The Lord has used you in a such a powerful way. Joshua Josiah Vidal----Joshua meaning God is my Salvation----Josiah meaning God supports/Jehovah heals-------Vidal meaning full of life. This is why we chose your name, Perfectly designed and destined by God Almighty. We never imagined how far and wide you'd travel to touch the hearts of many. Your name written in Jerusalem's wailing wall twice by people you hadn't even met yet. People praying for you in Japan, and throughout different parts of the world. WOW Joshie, through the Lord you were so amazing!
     People became better people. Nurses became better nurses. You taught them so so much. I often heard from nurses; saying that after caring for you they were able to do much much more at the hospitals. You trained many and kept us on our toes....that's for sure. What an angel you are. Mommy and daddy love you so. Your brothers love you and miss you dearly. I remember how you loved to listen to their voices and hear them getting silly wrestling around. You brought them many smiles. Our hearts hurt, but we know we will see you again. You are so loved. I'm missing how I'd bounce you and roughen you up. You loved every single moment. I miss how you'd get hyper sometimes and swing your legs back & forth. I'm missing the hugs and kisses we'd share. The smell of your breath as I'd put my face near your angelic little face. The way I'd hug you tight as I gave you endless kisses. Your beautiful eyes and the way you'd speak to us through them. Your beautiful silky thick hair everyone loved to touch. Oh, and that sweet sweet face. It hurts so much to not feel your warmth. The way you'd get upset and throw your little fits by getting so stiff cause you wanted what "you" wanted.
     You had a hard time with this earthly body, but you sure were smart. You taught me how to read your little "wants" and needs. You are so loved. Mommy, daddy, and brothers will be okay. We know how hard it was for you here. We love you so. So many times I thought I was ready to let your spirit leave this earth so you could finally rest, but you knew it was when our father in Heaven said "your angelic mission was complete". From the very beginning of your birth to the time you left this Earth, you have changed people's lives. Our father in Heaven's Mighty Plan.
     Rest now my precious baby Joshie from all you have done. Now in Heaven your party has just begun. When I said to you in the ER, "what do you want baby...what do you need?" "Are you ready to go with Jesus" "Whatever you want..it's okay go with the angels...go with Jesus." As I felt your little spirit leave, you showed me once again, what you needed and wanted. Thank you for helping mommy and daddy know.
You now have returned to holding the Lord's hand once again, and playing with the angels. I see you dancing, worshipping, and praising. I know you are in such glorious surroundings. Have fun my baby Joshie. Say hi to everyone for us. I love you so so much my wonderful, strong, beautiful, angelic, miracle baby Joshie. You are so Loved. I am very Proud of you my love.

I can't wait till we see you again.

                                                                            Love,
                                                                            Mommy and Daddy Forever

Missing my Joshie........(included prayer I wrote and read at prayer service)

2011-09-01T17:29:00.001-05:00

I've been asked if I could post the prayer I wrote and read at Joshie's prayer service. I decided to post it here on his blog. This prayer was written for his 1st birthday. He spent his first birthday at the hospital and when he was finally discharged we had a huge birthday party for him. I recall coming out of the hospital and phone calls being made immediately notifying of an emergency birthday party. The following day everyone showed up! It was great to see how much love Joshua was surrounded by. He continues to be surrounded with Love, but now he is face to face with the one who gave/gives his greatest Love. Thank you Jesus.

I Love you so so much Josh and I miss you dearly. I miss you and long to hold you in my arms. It hurts so deep in me as though the sorrow shoots from my stomach, to my heart, and pours throughout. When I cry for you, the tears come from deep within me. It seems as the days go by, my sadness deepens. I've been told repeatedly he's in a better place....I know he is and truly believe it. However, I am still "mommy" and crave my child's warmth in my arms. I wish i could see you and just touch your hair or just a little finger. When the pain seems so strong that I cannot handle it....I think about all the hard times you endured. This gives me the peace I need for those moments. It reminds me that my baby boy is no longer having to go through all the hurt anymore. You are no longer hurting anymore. Love you my strong Joshie. Forever and Always....kisses and hugs

Here is the prayer I wrote and read:

BEING THANKFUL
Lord,
Many will not understand the way it feels to be thankful.... for the moment you can finally take a deep breath and feel the relief of finally getting to hold your baby after seeing him lay there, day in and out----hooked up to machines, being poked, tested, and pumped full of drugs.

The relief of feeling him in your arms, but yet feeling sadness that you can't hold him even closer.

NOt many will understand the way it feels to be so thankful to hear---- he had a bowel movement and is now urinating-----what a blessing to our ears!

OH! to be thankful for every breath that you see him take....So, So, thankful!

Many people do not understand and ask "why do these people smile just for a tiny little cough they hear", "a little twitch of the nose", "a little finger that curls", or even "a little curl of this tiny foot."

OH! what it means to be thankful.

To be thankful to hear him cry after praying day after day, that one day you will hear his voice. THANK YOU, OH THANK YOU!

Not many will understand the way it feels to be so thankful to see your baby take a complete swallow and for it to actually bring tears to your eyes because you know it's a blessing from above.

Not many will know the feeling of being thankful just because your baby has gained one little pound. What an accomplishment!

Even through many difficult moments of feeling exhausted and drained physically, mentally, and spiritually....I am truly thankful.

I cannot express how thankful I am for the miracles I see before me.

For they may not understand what it means to be waiting for what seems so small, but yet so miraculous of a miracle that the Lord has in store.

For many will not understand but I pray that they do know how truly blessed they are. AMEN

Count your blessings and treasure every miracle in you life. The Lord is great and our miracle JOSHUA is proof.
Many times I ask why and I only have little glimpses but yet don't fully understand why....but one thing I do know is... I am truly thankful for my little angel Joshua.
Love,
Mommy

Heaven

2011-07-23T20:03:00.002-05:00
Joshua went to heaven on Thursday, July 21, 2011. I may or may not post later. I will do my best to post pictures when I can. So many things to do right now. I miss my lil baby so much already. I feel lost without him. I know he doesnt hurt anymore. The Lord is my strength and my guide.

Hernia Hernia Go Away!

2010-06-23T14:10:00.002-05:00
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

2010-06-15T09:45:00.002-05:00
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

2010-05-19T09:51:00.002-05:00
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.

updates (Nov - April)----- Joshua Comes home sick from ICU

2010-05-13T00:04:00.000-05:00
OK so I haven't posted anything in a long while. It has been tough lately. However I'm still living and learning....that's for sure! Well my last post he had surgery stayed in hospital from November 12-14...awesome right? Yes, then December 16 he was admitted again basically same (lungs and slight cold). It sent us straight to ICU. He was there from Dec. 16-22.....again another pretty short stay...thank you Lord. Still pretty hard time for us especially being so close to Christmas. Of course being the goof I am I pretty much went in there telling the nurses we were there just as a visit and I had a talk with Joshie. I made up my mind we were getting out quick cause I still didn't have all our presents yet. I was giving him only until Monday (3-4days). Joshua of course likes to do his own thing and we didn't leave until Tuesday. How funny is that!! I really think the Lord likes to see how I'm going to react. It's sometimes so comical the way things turn out. I told the nurses Joshua was just being stubborn. You better believe I was in there making them rearrange everything just so I could hold him in order to do manual cpt (patting his back firmly to loosen the stuff up in his lungs).

Well, after all this excitement (kidding of course)I went back to work! It felt so good to go back to teaching. Actually I didn't really go back full time I decided to just enter into the world of substitutes. My husband says he could see a difference in me as far as doing something I love doing. It was nice while it lasted. I do have to say it made me feel good when people gave me compliments about my teaching and classroom management. For a while it made me feel a little more normal or at least I had a little something that I had before I entered this whole "other world". Since I was able to go to different classrooms and schools I also met many people. At times I was able to share my experiences with other educators. I tell you...Joshie is such a little testimony even when I feel it is the hardest time for us. I also stopped substitute teaching to start tutoring for tests coming up. All this and juggled my boys very active schedules....juijitsu....tball...football...basketball...soccer...boy scouts...etc..yes many activities. We do balance it out though to remain sane of course (keep in mind I have 4 boys... hahah).

Around March 11 Joshie became sick and it just escalated from there. It really wasn't that bad at first. I called the Dr. and got some stuff taken care of. He got better at first and then he was good during the days but horrible during the nights. This means we both weren't getting a whole lot of sleep. I also was thinking it might be allergies. I still think it played a role to where we are now. Towards the end of April we had already tried at least 3 antibiotics and couple of steroids. I took him in to DR. visit and to ER (which I knew they wouldn't keep him in cause during the day he was ok--not that bad). Then finally went in on April 26 and was admitted. He has been in ICU for about three weeks now. I will post more tomorrow and post pictures also.I am exhausted right now. He was just discharged late this afternoon but he is still a very sick little baby. I will give details tomorrow of what is going on. For now I will say...there is not much more they can really do but wait and see. His lungs are not strong. He is very tired and not really fighting as strong as before. This time its really been hard for him. They discharged us cause they really weren't doing a whole lot anymore. He can either get better slowly or get worse slowly. However, God is great and its been quite a testing time for us. It is awesome to know that he is still sending us little signs and fresh revelations even at the hardest time in our life. We are needing strength and peace more than ever right now. I will share more tomorrow.

Back Home and Sick

2009-12-04T11:17:00.001-06:00
Well, surgery went well and we only stayed at the PICU for about 3 days. Thank you for all your prayers because I truly believe that is what got us home so fast. We have never stayed such a short time and we have never been released straight from PICU. A couple of days later after we came home he began to have high fever. It lasted for about a week. I was very concerned about it especially since he had just had surgery. However, a few tests and xray later (I had to practically nag at the surgeon to run some tests and didn't accept it was "just his body getting use to it") we found out he had STREP THROAT. Yes, strep throat. I was so glad that is all he had and nothing else that would drag us back to the hospital. Thank you to those who have shown us your support. I especially want to thank those of you who just simply let us know you are praying. It means the world to us. I really believe it helps us get through these tough times.

While at the hospital I met a mom who had her child on a vent and was facing the decision of letting him go. It was truly heart breaking to hear what she had been going through. I went into the PICU hallway and began to pray with her. At that moment I really didn't care who saw or what anyone thought. I really think the Lord puts these people in my path for some reason or another. I know at that moment it is not my strength or faith that allows me to react in prayer. Honestly, I don't even feel like praying for anything sometimes. A couple of hours later I'm a mess. I feel like I want to fall apart emotionally. Here I am waiting for them to give me word on how the surgery is going with MY SON and feel extremely nervous, spiritually not at my best, and feel physically drained. Who the heck do I think I am praying for someone else??!! I know it's only by God's Grace and His Strength. I also know many people pray for us and Joshua. This is probably what sustains us through this crazy ride. I even joked with my parents telling them I have to learn to not talk to anyone or answer any questions...basically stick to myself so I won't "get involved". I get so emotional and everything becomes very personal. Well, in the very beginning of our journey I did say Joshua would do something GREAT. It's like a giant puzzle that I know the Lord will bring all together someday.

Joshua has not been doing well this week. He has been choking and gagging on thick secretions and doesn't seem to clear. I am really concerned about his lungs. This is the way he gets when his lungs collapse. He just started on antibiotics and other meds. Hopefully this will do the trick. We have been suctioning him a lot. It also gets scary when he gets really red from choking because he can't bring it up. He is miserable and cries because of all the suctioning. It is hard seeing him tear up and heart breaking to see the look on his face as soon as we turn on the suction machine. I really was hoping not to have to suction so much especially since he just had surgery and they fixed the hernia. We really don't have a choice especially if he is choking. It is horrible. Pray he gets better soon so he doesn't loosen the fundoplication and get another hernia. I spoke to the surgeon and he said there really isn't much we can do about it. We can't stop suctioning because he doesn't always cough it up and obviously airway is priority.

Joshua Calling ALL Prayer Warriors!!!!!

2009-11-11T23:38:00.000-06:00

Halloween 09

GI Joe

Joshua will be going into surgery tomorrow morning. We need to be there by 5:45am! So, what am I doing still up?? I can't sleep. Different thoughts going through my mind... Will Pray.

I Love My Angel

2009-10-21T21:54:00.000-05:00
I had not posted because our visit to the surgeon didn't really change anything. The only thing we decided was do the surgery or not????? So we decided to see if he was truly refluxing because he has had a lot of milky mucus like secretions. We put food coloring into his milk and then did a follow up with the surgeon. No blue coming up!! However, he has had a lot of issues digesting his food because of the hernia. When we vent him he seems to have a lot of food still in his tummy and lots of air. Then his feeding need to be held back and therefore not getting all calories he is suppose to get. We just saw the surgeon Monday again and he said this is reason enough to have surgery. BUMMER!!! I'm not sure why but this time I really feel sick to my stomach about it. It might just be because of what he did the last time (placed on vent and didn't do so well). Also, it is also a higher risk because he's had surgery more than once now. There is also a possibility this time they might need to really open up the area in his tummy. The surgeon will be placing a mesh of some sort to try to help support the stomach to try to prevent another hernia. Honestly I don't even feel like posting anymore or explaining.Pray for the best. With or without Faith....it is scary. This is my precious baby. Surgery date is Thursday, November 12.

Possible Surgery Again

2009-09-03T11:08:00.000-05:00
Well, we almost stayed out of the hospital for about 5 months. Joshua was discharged out of the hospital last Friday (aug.28). We were there for 10 days!!!!!!!!!! I hate being there. I felt so bad for my two little ones (Isaiah and Isaac) because they had to go back and forth the first week of school. Now we are out and this week has been filled with doctors appointments. I feel like I haven't caught up with my sleep or rest. He had pneumonia and more so on his left side which is the side he had previous surgery on. We took him in because he was in respiratory distress. It was crazy because it seemed like it was from one moment to the next. As a matter a fact we had just seen the neurologist during the day and then that night he spiked a fever. His heart rate reached about 200-220 and fever shot up to 104. His respiratory rate was also very high. It was horrible to see him struggle. For the most part I usually hold it together pretty well. I've even had some nurses at the hospital tell me I am very calm and show to be very strong. However, at the time I seem to be fine because I know this is when Joshua needs me the most I guess. I feel like I need to be his voice especially with the residents in the hospital (whom I always have bad experiences with at the hospital). Thank God for our pulmonologist and nurse practitioner whom I owe so much to!!!!!! After they got involved and the residents finally listened to me, Joshua was able to calm down and bring his heart rate back down. When he was able to catch his breath he finally let out a little cry. I have never heard such a sad sad cry come out of him. It was a different cry. It broke my heart to see and hear him cry that way. There in our room after everyone cleared out, just the two of us, we cried together. At that moment is when I begin to think I can loose my baby. It is so scary. I love him so so so much. I can't even imagine my life without him.

After having x-rays they pretty much stumbled upon finding a hiatel hernia. Yes, again another one. It might also be because when they did the fundoplication this second time, they did it even more tight than the first one so it would hold. It being so tight can cause him to gag and the pressure can cause the hernia. So.....now they want to fix it again....so that means surgery again. They are looking at about 4-6 weeks to make a final decision on how to approach this. For now we are giving him time to heal and rest after a hard 10 days at the hospital. This means more tests to have a good look at what is going on. Yesterday we saw the GI doctor and he said he will talk to the surgeon to decide on either doing an endoscopy or esophagram to take a good look inside his chest area. Please pray for him. I am terrified of surgery, especially because of what happened the last time (stop breathing and placed on a vent). He is a very "high risk" so I wish we didn't have to put him through it all over again. I know surgery will also overwhelm him and then he ends up with lung issues all over again. My little guy is such a fighter he has gone through so much.

Well, as far as prayer goes we need lots of it! We have not lost our faith, but we have grown weary. We have been visiting different places to worship trying to find "a place to fit". Our lives have changed so much these last two years. After going in and out of the hospital so many times it seems like people get "immune to hearing we are back in..pray..." I'm not sure if that makes any sense to anyone else but us. In the beginning I would call "everyone" to have them pray. After a while you learn you have to just rely on the ones that really understand our day to day challenges. Those are the ones that will truly pray and be there when you need them.

Will post later for updates.
Pray for all of us.............Strength, Faith, Peace, Healing.

The Boys....Joshua is 2!!!

2009-06-30T11:53:00.000-05:00
Celebrating Isaac's 5th Birthday and Joshua's 2nd

Tony Joe 12yr Joshua 2yr Isaac 5yr Isaiah 6yr

Joshua sporting the spike look

Well, I'm not sure if I've really ever posted on my other boys. For those of you who do not know I am a stepmom to Tony Joe, he is my 12yr old. Isaiah is my 6 year old and Isaac is now 5 yrs old. Then of course, Joshua is my baby who just turned two. Yes, I have a house full of boys!! Very busy, entertaining, and active household for sure.

As for Joshua, he is doing ok right now. Still working on seizure control because they have been stronger. So as of right now we are changing dose on his meds. Pray for the best. He has been smiling more and it is the cutest. I will post pictures later hopefully I can catch him in the act. On my way out for appointment but wanted to post quick update.

Terrible Two?? Wonderful Two!!

2009-05-21T22:49:00.000-05:00
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

Joshie the tough guy

2009-05-02T01:05:00.000-05:00
Well, he has been sleeping better with his new little cpap machine! Oh my gosh who knew how great it would be to go to bed at 11:30pm or even 12:00 midnight instead of 1:30 in the morning. Yes, our little routine would be to stay up until he could no longer stay awake and fall asleep at 1:30am. Now he has been sleeping by 11:30pm and some days even a little earlier. He also looks so peaceful now when he is sleeping. The only thing now keeping me from falling asleep soon after he does are his meds. He has a couple that are given at 12midnight and 1am. I try to stay up so I won't miss giving him the meds or I at least bump them up a little. However, it has been great knowing it is ok for me to fall asleep and not worry so much about his airway collapsing on him in the middle of the night. The way I sleep, I probably need a sleep study done on myself(ha ha)! I wake up for every little noise now because I am so use to listening out for him. His seizures unfortunately have not really improved. Actually it is always like clock work. He always seems to have them at 4 am and it wakes him up. I then calm him down and he falls back asleep. I hate it! He also gets them throughout the day. I want to start the ketogenic diet soon if this does not improve. We have tried almost all seizure medicines there are to try so far.

Joshua has been sick this week. His lungs have sounded a little wet. Secretions have increased again and he is struggling to clear them. I think he might have caught a cold. I have had to give him oxygen at night (or while sleeping). He also had a fever. I'm trying to keep him at home as much as possible and avoiding all the "sickness" going around right now.

When? What? & WHY?

2009-04-08T11:19:00.000-05:00
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!

Home Again

2009-03-17T09:30:00.000-05:00
He was just discharged from hospital yesterday evening. I am so glad to be home. He is still sick but not on oxygen or the vent anymore, thank GOD. I pray for his complete recovery. He struggled yesterday when we got home (overwhelmed with his secretions and couldn't get them out). We are exhausted!

PICU & Vent

2009-03-07T20:30:00.000-06:00
Joshua stop breathing for a short time today so he was intubated. Please pray for him.

Out of Surgery and SICK

2009-03-07T11:10:00.000-06:00
Pray for Joshua he was not doing well yesterday. Will post later

Surgery Again

2009-03-04T14:16:00.000-06:00
Well, a lot has happened since I last posted. After many tests, it shows that his left diaphragm is not working. It is paralyzed. I will post details later on what this means. NOt only do they need to redo the fundoplication...now they need to do a diaphragm plication. All this is the result of the traumatic birth injury that occurred OF COURSE!! This really gets me mad to think he was perfectly healthy and now all this is occurring because my crappy placenta. I am really frustrated, worried, and sad that he still continues to go through crap. He is also throwing up so much that now he is biting his tongue (so hard he makes himself bleed over and over again). So far he is scheduled to go into surgery Thursday morning. He will have the fundo and the diaphragm will be "tacked down" meaning they are going to sew it down so it won't continue to elevated and shift. My poor baby.... will post later

Hanging ON

2009-02-08T22:39:00.001-06:00
Tonight I am not having a very good night. I find myself just feeling horrible. I feel so helpless with everything. It is not specifically Joshua on my mind tonight. He is actually doing just ok right now. He seems to be losening a lot of secretions lately. Which I see as a good sign, although at times it gets pretty rough for him (has a hard time breathing causing us to be more aggressive with suctioning). I guess we won't really know until Thursday (x-rays).
I feel like I can't help or make things better. I do have faith and don't really think I am angry. I am just really hurt and sad with everything. Joshua's little friend is also continuously going through this roller coaster ride. I just wish these precious little angels didn't have to go through so much. It hurts.
I had someone ask me...does this affect your faith. Well, I don't think it affects personally my faith as far as me not Loving and believing in the Lord. It does at times make me just not want to have faith for that moment(my bad days). I know that sounds kind of confusing...but I know those of you in the same boat totally understand what I am talking about. I then just get over it and shake it off cause I know I NEED it because without it I WOULD NOT SURVIVE. SO I guess in that moment I just feel like I am hanging on. I pray for all the parents out there that feel like they are just "hanging on". I pray for renewed strength. I also pray that some day, some how, we have some kind of understanding in the mist of all the heartache.

Still Praying?!

2009-01-31T08:30:00.000-06:00
Well we had xrays Thursday and it showed that there is no change. We just got a percussor (which is a machine that vibrates and suppose to loosen stuff up in his chest. Also, we are starting two meds along with it. We are to do this for two weeks and then go back again for xrays. I pray we do see a change. My poor little guy is now being suctioned a lot more througout the day and constantly getting CPT (like aggressive patting on his chest/back). I hate suctioning him through his nose and mouth with the catheter! He gets so upset, tears up, and little face turns red. I know it is needed though. Don't check him off your prayer list yet...thank you.

Please Pray for Joshua

2009-01-24T00:04:00.000-06:00
Joshua has a collapsed lower lung lobe. They wanted to admit him into the hospital but are giving us a week to try a few things to get it to open up. I will take him in for xrays next week to see if it shows any improvements. His seizures have also slightly increased. They are also going to wait on the surgery (fundo) because he is sick.

Looking Good!!

2008-12-28T20:21:00.000-06:00
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.

Get Well Soon

2008-12-13T11:28:00.000-06:00
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.

Change of Plans & ER visit

2008-12-04T22:52:00.000-06:00
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!

Keep it Going

2008-11-25T08:47:00.000-06:00
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!

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

2008-11-06T14:04:00.000-06:00
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.

Healing Hurt

2008-10-12T23:10:00.000-05:00
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

2008-10-12T10:27:00.000-05:00
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.

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

2008-09-25T12:47:00.000-05:00
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.

Just another thing to add to the list?

2008-09-09T15:41:00.000-05:00
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.

Lift Joshua in Prayer

2008-08-24T01:55:00.000-05:00
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.

GET READY>>>>SET>>>GO

2008-08-19T14:29:00.000-05:00
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.

Quick update on the Raffle Winners

2008-08-06T11:57:00.000-05:00
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.

Faithfulness

2008-08-01T17:12:00.000-05:00
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.

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

2008-07-13T03:12:00.000-05:00

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.

Back Home....just in time!

2008-07-03T17:21:00.000-05:00
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.

Hospital Birthday Boy

2008-06-25T17:17:00.000-05:00
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.

Roller Coaster Not Over Yet ??

2008-06-20T01:15:00.000-05:00
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.

Quick Update

2008-06-11T18:18:00.000-05:00
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.

Neurologist Appt.

2008-06-05T09:38:00.000-05:00
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.

BLESSED

2008-06-02T22:01:00.000-05:00
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).

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

2008-05-27T23:31:00.000-05:00
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.

Staying Strong

2008-05-23T09:57:00.000-05:00
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.

And The Waiting Begins

2008-05-22T13:41:00.000-05:00
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.

How Much More???

2008-05-21T23:26:00.000-05:00
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.

Pressing On and Moving Forward...

2008-05-19T10:50:00.000-05:00
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

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

2008-05-16T11:28:00.000-05:00
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.

Surgery Scheduled

2008-05-08T17:55:00.000-05:00
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

2008-05-06T13:06:00.000-05:00
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

2008-05-03T19:37:00.000-05:00
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

2008-04-26T17:54:00.000-05:00
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

2008-04-26T17:45:00.000-05:00
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

2008-04-26T16:25:00.000-05:00
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

2008-04-26T15:39:00.000-05:00
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.