tag:blogger.com,1999:blog-91669757060500600572024-03-18T21:59:31.011-05:00Joshua...God's WarriorJoshua is a strong and determined little fighter. He is a little baby boy who has suffered through many obstacles due to a traumatic birth injury. He lived through four incredible years that proved he was and always will be God's Warrior. He has inspired everyone that came across his path. He is now in the hands of the Lord in Heaven. I pray this blog will help reach those dealing with sickness, death, or the daily struggles of a parent with a special needs child.Tony and Myrahttp://www.blogger.com/profile/15564941006813012029noreply@blogger.comBlogger60125tag:blogger.com,1999:blog-9166975706050060057.post-71828037165700529452012-07-17T23:51:00.001-05:002012-07-17T23:51:54.391-05:00Joshua Video Tribute<div class="separator" style="clear: both; text-align: center;">
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<br />Tony and Myrahttp://www.blogger.com/profile/15564941006813012029noreply@blogger.com3tag:blogger.com,1999:blog-9166975706050060057.post-62657689907427483522011-12-10T15:28:00.001-06:002011-12-10T16:21:59.609-06:00Christmas Message to MomChristmas? 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. <br />
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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.<br />
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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". <br />
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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.Tony and Myrahttp://www.blogger.com/profile/15564941006813012029noreply@blogger.com3tag:blogger.com,1999:blog-9166975706050060057.post-8007500310973569022011-11-21T14:26:00.001-06:002011-11-21T15:43:12.174-06:00When all you can do is SCREAM!!!!!!!!!!!!!!to the point of exhaustionMy 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. <br />
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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. <br />
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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. <br />
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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....<br />
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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".<br />
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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.<br />
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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.Tony and Myrahttp://www.blogger.com/profile/15564941006813012029noreply@blogger.com0tag:blogger.com,1999:blog-9166975706050060057.post-50178863885848213242011-10-03T11:49:00.001-05:002011-10-03T11:49:19.732-05:00Missing My BabySo 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. <br />
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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.<br />
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Today has been also a really tough day.Tony and Myrahttp://www.blogger.com/profile/15564941006813012029noreply@blogger.com0tag:blogger.com,1999:blog-9166975706050060057.post-32471548087329649672011-09-15T13:15:00.000-05:002011-09-15T13:16:47.505-05:00How are you doing? 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....<br />
(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.<br />
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.<br />
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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.<br />
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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.<br />
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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".<br />
Awesome! Isn't it great when God's word comes alive....Right in your face...lol.<br />
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Keep me in your prayers. <br />
Tony and Myrahttp://www.blogger.com/profile/15564941006813012029noreply@blogger.com3tag:blogger.com,1999:blog-9166975706050060057.post-22693139359431489072011-09-14T00:43:00.000-05:002011-09-14T00:43:13.299-05:00To My Dear Precious SonThis is the letter I wrote and read at Joshie's service.<br />
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My Dear Precious Baby Boy Joshie,<br />
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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. <br />
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.<br />
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.<br />
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. <br />
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.<br />
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!<br />
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.<br />
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.<br />
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. <br />
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. <br />
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I can't wait till we see you again.<br />
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Love,<br />
Mommy and Daddy Forever Tony and Myrahttp://www.blogger.com/profile/15564941006813012029noreply@blogger.com0tag:blogger.com,1999:blog-9166975706050060057.post-47324966601706822412011-09-01T17:29:00.001-05:002011-09-01T23:36:02.403-05:00Missing my Joshie........(included prayer I wrote and read at prayer service)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. <br />
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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 <br />
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Here is the prayer I wrote and read:<br />
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<i>BEING THANKFUL<br />
Lord,<br />
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.<br />
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The relief of feeling him in your arms, but yet feeling sadness that you can't hold him even closer.<br />
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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!<br />
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OH! to be thankful for every breath that you see him take....So, So, thankful!<br />
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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."<br />
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OH! what it means to be thankful.<br />
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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!<br />
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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.<br />
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Not many will know the feeling of being thankful just because your baby has gained one little pound. What an accomplishment!<br />
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Even through many difficult moments of feeling exhausted and drained physically, mentally, and spiritually....I am truly thankful.<br />
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I cannot express how thankful I am for the miracles I see before me.<br />
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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. <br />
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For many will not understand but I pray that they do know how truly blessed they are. AMEN<br />
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Count your blessings and treasure every miracle in you life. The Lord is great and our miracle JOSHUA is proof.<br />
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.<br />
Love, <br />
Mommy<br />
<br />
<br />
Tony and Myrahttp://www.blogger.com/profile/15564941006813012029noreply@blogger.com2tag:blogger.com,1999:blog-9166975706050060057.post-5114741246751843042011-07-23T20:03:00.002-05:002011-09-01T18:07:24.510-05:00HeavenJoshua 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.Tony and Myrahttp://www.blogger.com/profile/15564941006813012029noreply@blogger.com6tag:blogger.com,1999:blog-9166975706050060057.post-15417670002094029432010-06-23T14:10:00.002-05:002011-09-01T18:08:21.945-05:00Hernia Hernia Go Away!WEll when he was in ICU they discovered he had again another hernia (from all the gagging). The only thing to do is surgery again but he is to much of a high risk to go under right now. We finally got him stable! However, he threw up twice last thursday. He also has been having more food in his tummy than usual. So this means at times he is not digesting everything because of the hernia (food is shifting everywhere). It is not a constant thing yet so not gonna go into worry mode yet. I really don't think we will do surgery unless he really isn't digesting 1/2 of his usual intake. This will then be a major problem. Pedi doesn't think he will get through surgery if he does go under. So yes we traded one problem for another in the mean time. Another thing that can also affect him is throwing up and aspriating on it (going into lungs). It's like one BIG CYCLE. We are going to see the surgeon in Aug. to discuss what we basically already know (haha). <br />
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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.Tony and Myrahttp://www.blogger.com/profile/15564941006813012029noreply@blogger.com1tag:blogger.com,1999:blog-9166975706050060057.post-55276273843645676662010-06-15T09:45:00.002-05:002011-09-01T18:08:56.665-05:00cruise controlso 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.Tony and Myrahttp://www.blogger.com/profile/15564941006813012029noreply@blogger.com0tag:blogger.com,1999:blog-9166975706050060057.post-90780505980394992602010-05-19T09:51:00.002-05:002011-09-01T18:09:44.912-05:00Sleep Baby SleepWell 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. <br />
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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.<br />
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As far as pictures I will have to post later.Tony and Myrahttp://www.blogger.com/profile/15564941006813012029noreply@blogger.com3tag:blogger.com,1999:blog-9166975706050060057.post-16491774679207215772010-05-13T00:04:00.000-05:002010-05-13T00:05:01.066-05:00updates (Nov - April)----- Joshua Comes home sick from ICUOK 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).<br /><br /><br />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).<br /><br />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.Tony and Myrahttp://www.blogger.com/profile/15564941006813012029noreply@blogger.com2tag:blogger.com,1999:blog-9166975706050060057.post-38794656284923802892009-12-04T11:17:00.001-06:002009-12-04T12:12:42.749-06:00Back Home and SickWell, 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.<br /><br />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.<br /><br />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.Tony and Myrahttp://www.blogger.com/profile/15564941006813012029noreply@blogger.com0tag:blogger.com,1999:blog-9166975706050060057.post-60034568066079845882009-11-11T23:38:00.000-06:002009-11-12T00:01:34.191-06:00Joshua Calling ALL Prayer Warriors!!!!!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJOpnOw2nHqwTWHdvjVeW1HtYSnUsOmsKzxuj9VjfaBoucBRdImRwbHKnrTlLkAZcOid0uY7vonyHybhcwem9ov_Qip-_Sn5m1vvmN_tsypMlFaMbnImZDVtLQX4uyNsjDubOpSVwAMtND/s1600-h/joshie+halloween+09+005.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJOpnOw2nHqwTWHdvjVeW1HtYSnUsOmsKzxuj9VjfaBoucBRdImRwbHKnrTlLkAZcOid0uY7vonyHybhcwem9ov_Qip-_Sn5m1vvmN_tsypMlFaMbnImZDVtLQX4uyNsjDubOpSVwAMtND/s320/joshie+halloween+09+005.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5403088761619695218" /></a><br />Halloween 09<br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwHW992iDCYmVuLpusYPkNxIKVRzo42cXSsE_JsF1LMccWTvtoIiNMMZeAphAZTGT-gWtl5GvaMF-uKZanTNG5OinADao_zzTv-RhZzT0wx5_XfsTUiB-9I4MawoivFx0w16NZ97RP7KBq/s1600-h/joshie+halloween+09+003.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwHW992iDCYmVuLpusYPkNxIKVRzo42cXSsE_JsF1LMccWTvtoIiNMMZeAphAZTGT-gWtl5GvaMF-uKZanTNG5OinADao_zzTv-RhZzT0wx5_XfsTUiB-9I4MawoivFx0w16NZ97RP7KBq/s320/joshie+halloween+09+003.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5403088759511850962" /></a><br />GI Joe<br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdtSkoMLVB6hmDBYgstFMUptLuquntiQPsmYg2CKP_7-rx3hZ_q6smy4EHQOzWw9_j-GPOS6Fy5RAk2HcHj6xeBo_XlAu3oG4v3Q_hCZ4zvrqGPZk6eyHaeQ4IjLjiEO2iZI7IUQWe39zb/s1600-h/joshie+halloween+09+002.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdtSkoMLVB6hmDBYgstFMUptLuquntiQPsmYg2CKP_7-rx3hZ_q6smy4EHQOzWw9_j-GPOS6Fy5RAk2HcHj6xeBo_XlAu3oG4v3Q_hCZ4zvrqGPZk6eyHaeQ4IjLjiEO2iZI7IUQWe39zb/s320/joshie+halloween+09+002.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5403088751804347858" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigf3ASB5YR6j_-ETfV0rz2tHhBXJirhiGtQ7CGzJ_7asVpWu8agbeBKJ-X_EDyl0DV_bcJo0D9CRm-r8ymq_GRWDoxnJuuI0Bh4ITxP2ReqlRZF63mr7OBbrmKS_LI9NcuJ002J_FIZV6C/s1600-h/joshie+halloween+09.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 216px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigf3ASB5YR6j_-ETfV0rz2tHhBXJirhiGtQ7CGzJ_7asVpWu8agbeBKJ-X_EDyl0DV_bcJo0D9CRm-r8ymq_GRWDoxnJuuI0Bh4ITxP2ReqlRZF63mr7OBbrmKS_LI9NcuJ002J_FIZV6C/s320/joshie+halloween+09.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5403088747555085554" /></a><br /><br />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.Tony and Myrahttp://www.blogger.com/profile/15564941006813012029noreply@blogger.com1tag:blogger.com,1999:blog-9166975706050060057.post-10303661973614123692009-10-21T21:54:00.000-05:002009-10-21T22:19:45.946-05:00I Love My AngelI 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.Tony and Myrahttp://www.blogger.com/profile/15564941006813012029noreply@blogger.com1tag:blogger.com,1999:blog-9166975706050060057.post-20125244750539823962009-09-03T11:08:00.000-05:002009-09-08T00:00:47.814-05:00Possible Surgery AgainWell, 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.<br /><br />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. <br /><br />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. <br /><br />Will post later for updates. <br />Pray for all of us.............Strength, Faith, Peace, Healing.Tony and Myrahttp://www.blogger.com/profile/15564941006813012029noreply@blogger.com2tag:blogger.com,1999:blog-9166975706050060057.post-51247104920983349802009-06-30T11:53:00.000-05:002009-06-30T12:21:20.469-05:00The Boys....Joshua is 2!!!Celebrating Isaac's 5th Birthday and Joshua's 2nd<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYkUJzyvZpTObnXWpXez4WvpmxCRPm5Kna06nbDN2M7ZBjaPuYzwd_I5BYQ3s5ndgYLM8CmRItufEzy9IuCImcaNywgjKsTaBlqpGJpHO7prEOgBGCRDpIkQjlic3rJqwWxFsj0F_dsMRG/s1600-h/joshua+%26+Isaac+b-day+001.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYkUJzyvZpTObnXWpXez4WvpmxCRPm5Kna06nbDN2M7ZBjaPuYzwd_I5BYQ3s5ndgYLM8CmRItufEzy9IuCImcaNywgjKsTaBlqpGJpHO7prEOgBGCRDpIkQjlic3rJqwWxFsj0F_dsMRG/s320/joshua+%26+Isaac+b-day+001.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5353166047965376706" /></a><br />Tony Joe 12yr Joshua 2yr Isaac 5yr Isaiah 6yr<br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhR6_3Q35I9sWcCMJFNOOsF05yt02GUBzULtCLUl9URNELcDP_lj4KCHIlfBG8RkRjSG1IFPgkxBo9zLRoPwcP6VnSuBvNAdxfvRmKwciTi6aeC9iuGvpYVT0iRjoK9Ixg0hpP99gr8N95I/s1600-h/joshua+%26+Isaac+b-day+002.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhR6_3Q35I9sWcCMJFNOOsF05yt02GUBzULtCLUl9URNELcDP_lj4KCHIlfBG8RkRjSG1IFPgkxBo9zLRoPwcP6VnSuBvNAdxfvRmKwciTi6aeC9iuGvpYVT0iRjoK9Ixg0hpP99gr8N95I/s320/joshua+%26+Isaac+b-day+002.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5353166043997246306" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxG6x1JVWCTW2THV9ukNMQzOQVycd6N6pYv5DvEe2TsaXn8xbliKyCBByOc_OE_zZkJZNQ4PhKoQE1qwhIeyXryadUnKkp9MfeM8hWOwb1A9LxV2DvQqxYake_LiKexOP8PeUONzNQr1Aa/s1600-h/joshua+%26+Isaac+b-day+003.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxG6x1JVWCTW2THV9ukNMQzOQVycd6N6pYv5DvEe2TsaXn8xbliKyCBByOc_OE_zZkJZNQ4PhKoQE1qwhIeyXryadUnKkp9MfeM8hWOwb1A9LxV2DvQqxYake_LiKexOP8PeUONzNQr1Aa/s320/joshua+%26+Isaac+b-day+003.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5353166039468459314" /></a><br />Joshua sporting the spike look<br /><br /><br /><br />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.<br /><br />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.Tony and Myrahttp://www.blogger.com/profile/15564941006813012029noreply@blogger.com1tag:blogger.com,1999:blog-9166975706050060057.post-44020328539994346592009-05-21T22:49:00.000-05:002011-09-01T18:10:34.221-05:00Terrible Two?? Wonderful Two!!Well, his birthday is coming up. We have noticed he is very vocal now and cries when he is not HAPPY. It is really cute to see him with his little tantrums. It always makes me smile to see him cry unless of course it is cause of a seizure or something hurting him. He also had his first dental appointment. He totally hated it of course. He put up a fight---way cute though. Funny how the little things are appreciated. Heatlh wise, he is doing ok right now. I'm not really happy about his seizures but he is not as bad as he has been in the past. He is now putting up a fight at night giving us a hard time when we put the cpap machine on him--little stinker. <br />
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. <br />
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 stepTony and Myrahttp://www.blogger.com/profile/15564941006813012029noreply@blogger.com3tag:blogger.com,1999:blog-9166975706050060057.post-46121419707153838412009-05-02T01:05:00.000-05:002009-05-02T01:35:08.785-05:00Joshie the tough guyWell, 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. <br /><br />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.Tony and Myrahttp://www.blogger.com/profile/15564941006813012029noreply@blogger.com0tag:blogger.com,1999:blog-9166975706050060057.post-31189216301452064772009-04-08T11:19:00.000-05:002009-04-16T00:48:39.615-05:00When? What? & WHY?So I haven't had a chance to really sit down and post anything. Even if I did have one minute I don't think I would've wanted to anyway. This is how crappy I've been feeling lately. I know my last two posts have been very short and to the point. I have been going through so much "stuff" these last couple of weeks. So Joshua had three things done he had the fundoplication which helps him not throw up and a plication of the diaphragm. This plication was done because they saw that the left diaphragm was elevated and they believe it is paralyzed. They "tacked" it down so it won't keep shifting up and maybe can also move a little more by being tacked and movement of the right. This doesn't mean it is any better though. Along the way they discovered he had a hiatel hernia, which also is a reason for the severe reflux he had. He had all this done and seemed to be doing fine. Then the next day he was struggling with his secretions. It almost seemed like his little body was totally overwhelmed with everything. To make things worse, they weren't giving him his med for secretions (so it got worse). He then began having little episodes where he was choking on thick secretions and turning red/blue/purple. Then Joshua went apnic for a short time. They decided to intubate him because his lungs were full of secretions and they basically collapsed on him. I really think his little body got so tired and he just gave up. During this time I met a little baby boy and his courageous parents whom touched my heart. He has wonderful parents who held on to their faith till the very end of his time here. God bless his mom and dad.<br /><br />I did visit at the funeral home which really made me think about a lot of things... <br /><br />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. <br /><br /><br />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)<br /><br />Pray for the BEST!Tony and Myrahttp://www.blogger.com/profile/15564941006813012029noreply@blogger.com2tag:blogger.com,1999:blog-9166975706050060057.post-25289632679505130302009-03-17T09:30:00.000-05:002009-03-17T09:37:24.408-05:00Home AgainHe 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!Tony and Myrahttp://www.blogger.com/profile/15564941006813012029noreply@blogger.com2tag:blogger.com,1999:blog-9166975706050060057.post-2786679619112076662009-03-07T20:30:00.000-06:002009-03-07T20:38:47.497-06:00PICU & VentJoshua stop breathing for a short time today so he was intubated. Please pray for him.Tony and Myrahttp://www.blogger.com/profile/15564941006813012029noreply@blogger.com0tag:blogger.com,1999:blog-9166975706050060057.post-40387927435070422752009-03-07T11:10:00.000-06:002009-03-07T11:12:08.378-06:00Out of Surgery and SICKPray for Joshua he was not doing well yesterday. Will post laterTony and Myrahttp://www.blogger.com/profile/15564941006813012029noreply@blogger.com0tag:blogger.com,1999:blog-9166975706050060057.post-24606152916180502162009-03-04T14:16:00.000-06:002009-03-04T14:32:23.533-06:00Surgery AgainWell, 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 laterTony and Myrahttp://www.blogger.com/profile/15564941006813012029noreply@blogger.com2tag:blogger.com,1999:blog-9166975706050060057.post-62962111992051280222009-02-08T22:39:00.001-06:002009-02-08T23:21:08.413-06:00Hanging ONTonight 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). <br />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. <br />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.Tony and Myrahttp://www.blogger.com/profile/15564941006813012029noreply@blogger.com2