Green. Party. Hat.
So, I am sitting here at Peyton Manning's Childrens Hospital, watching Zion peacefully laying watching Alpha and Omega on his iPad. He is such an amazing boy. His tech lady was laughing nonstop along with us, making each and every step a new dimension of his "slumber party." What started as a smiley face on each hand quickly turned into head measurements, gooey hair, electrodes, tape, and even a under the nose "party mustache." With a few minor fusses, and a grease pencil over mommy and daddy's faces, he calmed down, and soon will be asleep peacefully with literally no breakdowns or even a single tear. God blessed us with the best boy in the world. God works in mysterious ways...yet sometimes His love is so plain to see that it never ceases to amaze me how easily we forget to thank Him, or even celebrate His existence. God has shown me what true strength is tonight. Zion is a beacon of hope to me, and has given me more tears of joy and happiness than any single person should be allowed. Thank you God for a truly amazing and undeserved gift.
I also wanted to let everyone know a little update to my previous post. Today was a long day, with numerous phone calls to several hospitals, administrations, as well small arguements with doctors and nurses...yet God worked it all out for us. We are here tonight with a regular sleep study, tomorrow night is a normal night with the addition of a bipap (cheers) (and please several prayers as it could be a battle), and Friday night is another sleep study complete with a new party getup and a bipap to measure the difference it will make in his sleep. This will be without doubt a long few days, but I know that God will take care of us, and in the end Zion will prosper through it all. So, as I previously wrote asking for help to provide Zion a bipap, I believe that God has answered our prayers, and through this experience we should have a bipap at our doorstep not long after returning home. If all goes well the next few days we should recieve the order from the doctors for a bipap and instead of having to provide one ourselves his doctors should pull through for us. Thank you for your help regardless, and I cannot express my gratitude for your prayers and willingness to help our son. We love you, and rest assured that no deed goes unappreciated and we are inspired to help anyone in need as you all have helped us.
I am going to sign off for the night. I will do my best to post as many updates as possible over the next few days. We would appreciate your continued prayers, and again we love you all.
Much love,
PH
Wednesday, August 17, 2011
Lump
I called in to work at 4:53 a.m. today. There is a rule that you have to call in before 5:00 or you will be penalized for late call in. I woke up at 4:30, shaved and jumped in the shower, and in a towel ran into Zion's room as his pulse ox alarm went off...finding him at 86...86. Are you kidding me? Multiple times in the night below 90. 86 though? And the man who called himself Zion's pulmonologist at PMCH says he no longer feels comfortable treating Zion, and has "referred" us to Cinci Childrens. Who, by the way, cannot get us in until sometime in October. We have been trying to make the first appointment there for a couple months. So for several months we have had no one to go to for any type of breathing issue or any new medical equipment, the only person we really can even talk to is Dr. S at PMCH, and he is too big of a coward to get us the equipment that every other SMA child has to ensure their numbers are flying high on their pulse ox all through the night. Peace of mind. Peaceful breathing. Its what we need and what Zion deserves. It blows my mind that someone who is supposed to be the expert on breathing has referred us to a hospital three hours away, a hospital that cannot get us in for months, all because he doesnt feel comfortable giving us equipment for Zion that he isnt used to. Thats what this all boils down to...he hasn't dealt with someone as small as Zion on a bipap.
So here I sit. Having just heard the news from Chelsea that another SMA warrior recieved their wings last night. Lump in my throat the size of a softball. I am sickened by this. My heart goes out to the Jones' family. I have never met you, spoke to you...but I love you. My deepest sympathies, and I truly mean it, I am praying for you. You cannot see it now, and it seems crazy...but I promise you it will get better and God will give you peace.
Thats my dilemma. You see, the Jones' family was one of two families narrowed down for the next Extreme Makeover Home Edition just weeks ago. And now, they have lost their beloved daughter to SMA. Its never ok to let your guard down for a second...to become complacent...to get too comfortable. I find myself trying to make myself feel ok about things...and in turn I get a little too comfortable with this idea that "Zion is stronger than him or her" and "Zion is a type 2 not a 1" or any other statement I make to feel a glimmer of peace in this war. Its not ok to become complacent.
I sit here in Greencastle, Indiana....I look back in time a year and I am in awe, truly in AWE at the love and compassion on my community and family. Last year we were given the money plus more to pay for Zion's power chair. We have been showered with financial blessings from so many people...its truly amazing. We have been able to get Zion a manual chair, a power chair, a new stander, a tomato seat, a new van, pay medical bills, stop lawsuits...I mean the generosity of people, some who I don't even know, has saved my family and kept a roof over our heads. Wow.
If you have read my previous blogs you know how much we are pulling for a cure to save all the SMA kids across the globe. As a man, and as a father, I wish so much that I had the power to heal Zion. Its embarrassing to me that I cannot provide for Zion all the things he needs, and that I have to rely on my family and the community to step in and help provide what I cannot. And it truly makes me even sicker than I already am to do this, but I am asking you who read this to help me yet again provide something for Zion I cannot on my own. We need a bipap for Zion. Bipap means bilevel positive airway pressure. Machine breathing. Zion stops breathing in his sleep because of his sleep apnea. Hence, numbers like 86 pop up because Zion stops breathing and his numbers drop. Since we cannot get one from our pulmonologist the reality is that this is now something I am going to have to purchase out of pocket, because Zion cannot continue to sleep without one. Many families have advised us that SMA kids need to stay above 94 at all times, and without a bipap that will not be possible with Zion, and any number below 90 is extremely unacceptable. Looking up bipap machines online, this will run us anywhere from $750-$5000 when looking from the spectrum of worst to best. Of course, I want the best for Zion, yet the reality is that I currently cannot afford the worst bipap for him on my own. So I am asking you, if you can help in any way, we would greatly appreciate it. I hate asking for money, but I feel an extreme sense of urgency in getting this equipment for Zion. I cannot sit back and allow myself to feel that all is well, when in reality a moment of slack could lead to serious problems for Zion or worse, something that I have not yet allowed myself to come to terms with. I feel that God has given me peace that Zion will see a cure for SMA, but I cannot allow myself to let that restrict me from doing everything I can to get all the resources he needs.
So, today please say a prayer for Zion and the Jones family. Last night as I laid in bed with him as he was falling asleep I laid my hand on his chest and raised my other hand towards Heaven asking God to come touch my son and heal him. I know that God will give us the cure for SMA. I look forward to dancing and celebrating the news that the days of SMA will be over. For now, we have heavy hearts as the realization that our dreams are not yet reality hit a little too hard as we mourn the loss of sweet Skylar. Skylar, fly high. Dance in Heaven, run, play, and be free with the rest of our beloved SMA angels. You will not be forgotten.
So here I sit. Having just heard the news from Chelsea that another SMA warrior recieved their wings last night. Lump in my throat the size of a softball. I am sickened by this. My heart goes out to the Jones' family. I have never met you, spoke to you...but I love you. My deepest sympathies, and I truly mean it, I am praying for you. You cannot see it now, and it seems crazy...but I promise you it will get better and God will give you peace.
Thats my dilemma. You see, the Jones' family was one of two families narrowed down for the next Extreme Makeover Home Edition just weeks ago. And now, they have lost their beloved daughter to SMA. Its never ok to let your guard down for a second...to become complacent...to get too comfortable. I find myself trying to make myself feel ok about things...and in turn I get a little too comfortable with this idea that "Zion is stronger than him or her" and "Zion is a type 2 not a 1" or any other statement I make to feel a glimmer of peace in this war. Its not ok to become complacent.
I sit here in Greencastle, Indiana....I look back in time a year and I am in awe, truly in AWE at the love and compassion on my community and family. Last year we were given the money plus more to pay for Zion's power chair. We have been showered with financial blessings from so many people...its truly amazing. We have been able to get Zion a manual chair, a power chair, a new stander, a tomato seat, a new van, pay medical bills, stop lawsuits...I mean the generosity of people, some who I don't even know, has saved my family and kept a roof over our heads. Wow.
If you have read my previous blogs you know how much we are pulling for a cure to save all the SMA kids across the globe. As a man, and as a father, I wish so much that I had the power to heal Zion. Its embarrassing to me that I cannot provide for Zion all the things he needs, and that I have to rely on my family and the community to step in and help provide what I cannot. And it truly makes me even sicker than I already am to do this, but I am asking you who read this to help me yet again provide something for Zion I cannot on my own. We need a bipap for Zion. Bipap means bilevel positive airway pressure. Machine breathing. Zion stops breathing in his sleep because of his sleep apnea. Hence, numbers like 86 pop up because Zion stops breathing and his numbers drop. Since we cannot get one from our pulmonologist the reality is that this is now something I am going to have to purchase out of pocket, because Zion cannot continue to sleep without one. Many families have advised us that SMA kids need to stay above 94 at all times, and without a bipap that will not be possible with Zion, and any number below 90 is extremely unacceptable. Looking up bipap machines online, this will run us anywhere from $750-$5000 when looking from the spectrum of worst to best. Of course, I want the best for Zion, yet the reality is that I currently cannot afford the worst bipap for him on my own. So I am asking you, if you can help in any way, we would greatly appreciate it. I hate asking for money, but I feel an extreme sense of urgency in getting this equipment for Zion. I cannot sit back and allow myself to feel that all is well, when in reality a moment of slack could lead to serious problems for Zion or worse, something that I have not yet allowed myself to come to terms with. I feel that God has given me peace that Zion will see a cure for SMA, but I cannot allow myself to let that restrict me from doing everything I can to get all the resources he needs.
So, today please say a prayer for Zion and the Jones family. Last night as I laid in bed with him as he was falling asleep I laid my hand on his chest and raised my other hand towards Heaven asking God to come touch my son and heal him. I know that God will give us the cure for SMA. I look forward to dancing and celebrating the news that the days of SMA will be over. For now, we have heavy hearts as the realization that our dreams are not yet reality hit a little too hard as we mourn the loss of sweet Skylar. Skylar, fly high. Dance in Heaven, run, play, and be free with the rest of our beloved SMA angels. You will not be forgotten.
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