Billingsley99 Posted July 16, 2020 Report Share Posted July 16, 2020 When we go to the Dr we never know exactly what to expect. The past 2 weeks we have had multiple appointments. Because many of you care and do reach out to me I just want you all to know what is going on. So far all of the visits have been good for the most part. His White count and other levels from the panel were stable. Having a bone marrow failure diagnosis is very scary for us but we watch his numbers very closely and the Drs are very pleased. In March his GI doctor put him on a medicine to help him because his pancreas does not create enough enzymes to break down food and this medicine should help him grow. Since March 15th he has gained 10 pounds and grown 2.5 inches. This is the first real spike that he has ever had on his growth chart. His Mito Dr and his hematologist have given him the go ahead to go back to school if we choose to send him. He will be getting braces soon which we hope helps as well with his nutritional well being. Unfortunately he still does not like to eat and it is a constant battle Lots going on here lately and several more apts over the next 2 weeks but just wanted to share. This forum is a big reason why I am still party sane and never went off the deep end. i thank you so much for your care concern and prayers. Ayden say hi!!! Link to comment Share on other sites More sharing options...
IUFLA Posted July 16, 2020 Report Share Posted July 16, 2020 7 minutes ago, Billingsley99 said: When we go to the Dr we never know exactly what to expect. The past 2 weeks we have had multiple appointments. Because many of you care and do reach out to me I just want you all to know what is going on. So far all of the visits have been good for the most part. His White count and other levels from the panel were stable. Having a bone marrow failure diagnosis is very scary for us but we watch his numbers very closely and the Drs are very pleased. In March his GI doctor put him on a medicine to help him because his pancreas does not create enough enzymes to break down food and this medicine should help him grow. Since March 15th he has gained 10 pounds and grown 2.5 inches. This is the first real spike that he has ever had on his growth chart. His Mito Dr and his hematologist have given him the go ahead to go back to school if we choose to send him. He will be getting braces soon which we hope helps as well with his nutritional well being. Unfortunately he still does not like to eat and it is a constant battle Lots going on here lately and several more apts over the next 2 weeks but just wanted to share. This forum is a big reason why I am still party sane and never went off the deep end. i thank you so much for your care concern and prayers. Ayden say hi!!! Good news! He's a very courageous guy...Very inspirational for me! Link to comment Share on other sites More sharing options...
milehiiu Posted July 16, 2020 Report Share Posted July 16, 2020 Thanks for the update. Prayers continue to go out to Hoosier Sports Nation's mascot. Hi back to Ayden. Link to comment Share on other sites More sharing options...
DWB Posted July 16, 2020 Report Share Posted July 16, 2020 We're all rooting for Ayden, you, and your family ! Link to comment Share on other sites More sharing options...
Billingsley99 Posted July 16, 2020 Author Report Share Posted July 16, 2020 1 minute ago, DWB said: We're all rooting for Ayden, you, and your family ! Thank you. That means a lot and I know that it is genuinely true Link to comment Share on other sites More sharing options...
jefftheref Posted July 16, 2020 Report Share Posted July 16, 2020 Great news. Please give your young man a Hoosier Hug for me. He is an inspiration and you and your wife are truly amazing parents. Link to comment Share on other sites More sharing options...
Proud2BAHoosier Posted July 16, 2020 Report Share Posted July 16, 2020 The fact Ayden is growing and gaining weight is very encouraging! Keep it going..... Link to comment Share on other sites More sharing options...
Lostin76 Posted July 16, 2020 Report Share Posted July 16, 2020 2 hours ago, Billingsley99 said: When we go to the Dr we never know exactly what to expect. The past 2 weeks we have had multiple appointments. Because many of you care and do reach out to me I just want you all to know what is going on. So far all of the visits have been good for the most part. His White count and other levels from the panel were stable. Having a bone marrow failure diagnosis is very scary for us but we watch his numbers very closely and the Drs are very pleased. In March his GI doctor put him on a medicine to help him because his pancreas does not create enough enzymes to break down food and this medicine should help him grow. Since March 15th he has gained 10 pounds and grown 2.5 inches. This is the first real spike that he has ever had on his growth chart. His Mito Dr and his hematologist have given him the go ahead to go back to school if we choose to send him. He will be getting braces soon which we hope helps as well with his nutritional well being. Unfortunately he still does not like to eat and it is a constant battle Lots going on here lately and several more apts over the next 2 weeks but just wanted to share. This forum is a big reason why I am still party sane and never went off the deep end. i thank you so much for your care concern and prayers. Ayden say hi!!! A ten pound weight gain is impressive. Sending you guys positive vibes and virtual high five to Ayden. Can't imagine the roller coaster of hope and fear that you guys are most likely experiencing around these visits. Link to comment Share on other sites More sharing options...
Billingsley99 Posted July 16, 2020 Author Report Share Posted July 16, 2020 13 minutes ago, Lostin76 said: A ten pound weight gain is impressive. Sending you guys positive vibes and virtual high five to Ayden. Can't imagine the roller coaster of hope and fear that you guys are most likely experiencing around these visits. Very much appreciated. Link to comment Share on other sites More sharing options...
Billingsley99 Posted July 16, 2020 Author Report Share Posted July 16, 2020 34 minutes ago, jefftheref said: Great news. Please give your young man a Hoosier Hug for me. He is an inspiration and you and your wife are truly amazing parents. I have to give God and Mom all the credit. Link to comment Share on other sites More sharing options...
BobSaccamanno Posted July 16, 2020 Report Share Posted July 16, 2020 Best wishes to Ayden. Sounds promising. What a tough little guy who inspires us all. Link to comment Share on other sites More sharing options...
Billingsley99 Posted July 16, 2020 Author Report Share Posted July 16, 2020 1 hour ago, BobSaccamanno said: Best wishes to Ayden. Sounds promising. What a tough little guy who inspires us all. Our family adopted a moto many years ago. You never know how strong you are until being strong is your only option. Ayden embodies that for sure Link to comment Share on other sites More sharing options...
rico Posted July 16, 2020 Report Share Posted July 16, 2020 Give the fella some hugs from Rancho Rico. PS---Is he by chance on Creon? Link to comment Share on other sites More sharing options...
Seeking6 Posted July 16, 2020 Report Share Posted July 16, 2020 5 hours ago, Billingsley99 said: When we go to the Dr we never know exactly what to expect. The past 2 weeks we have had multiple appointments. Because many of you care and do reach out to me I just want you all to know what is going on. So far all of the visits have been good for the most part. His White count and other levels from the panel were stable. Having a bone marrow failure diagnosis is very scary for us but we watch his numbers very closely and the Drs are very pleased. In March his GI doctor put him on a medicine to help him because his pancreas does not create enough enzymes to break down food and this medicine should help him grow. Since March 15th he has gained 10 pounds and grown 2.5 inches. This is the first real spike that he has ever had on his growth chart. His Mito Dr and his hematologist have given him the go ahead to go back to school if we choose to send him. He will be getting braces soon which we hope helps as well with his nutritional well being. Unfortunately he still does not like to eat and it is a constant battle Lots going on here lately and several more apts over the next 2 weeks but just wanted to share. This forum is a big reason why I am still party sane and never went off the deep end. i thank you so much for your care concern and prayers. Ayden say hi!!! Even if some of us never reply to every update or post know he's always being thought of. Continued strength to you all. Link to comment Share on other sites More sharing options...
Billingsley99 Posted July 16, 2020 Author Report Share Posted July 16, 2020 3 minutes ago, rico said: Give the fella some hugs from Rancho Rico. PS---Is he by chance on Creon? Thanks DD I mean Rico. Yes he is. He was Creon until he was 4 but for some reason they took him off of it Link to comment Share on other sites More sharing options...
Billingsley99 Posted July 16, 2020 Author Report Share Posted July 16, 2020 3 minutes ago, Seeking6 said: Even if some of us never reply to every update or post know he's always being thought of. Continued strength to you all. Really appreciate it. HSN will always gave a very special place in my heart Link to comment Share on other sites More sharing options...
IU Scott Posted July 16, 2020 Report Share Posted July 16, 2020 Power of prayer Link to comment Share on other sites More sharing options...
Billingsley99 Posted July 16, 2020 Author Report Share Posted July 16, 2020 11 minutes ago, IU Scott said: Power of prayer Without a doubt. Hope you are getting closer to full strength Link to comment Share on other sites More sharing options...
Drroogh Posted July 16, 2020 Report Share Posted July 16, 2020 I want to be "party sane" but seriously keeping you all in the prayers! And just to jump tracks for a moment and share a good news update of my own! My son and daughter-in-law welcomed the first granddaughter into the family last night! Everyone is doing well in spite of this nasty virus! Link to comment Share on other sites More sharing options...
BobSaccamanno Posted July 16, 2020 Report Share Posted July 16, 2020 7 minutes ago, Drroogh said: I want to be "party sane" but seriously keeping you all in the prayers! And just to jump tracks for a moment and share a good news update of my own! My son and daughter-in-law welcomed the first granddaughter into the family last night! Everyone is doing well in spite of this nasty virus! Congratulations! That’s great news. Link to comment Share on other sites More sharing options...
IU Scott Posted July 16, 2020 Report Share Posted July 16, 2020 47 minutes ago, Billingsley99 said: Without a doubt. Hope you are getting closer to full strength Health wise all of my test has come back well. Still looking for a job but I am going to be selective and not just jump at the first thing. Link to comment Share on other sites More sharing options...
Parakeet Jones Posted July 16, 2020 Report Share Posted July 16, 2020 Thanks for the update. God bless you all. Link to comment Share on other sites More sharing options...
Billingsley99 Posted July 17, 2020 Author Report Share Posted July 17, 2020 12 hours ago, Drroogh said: I want to be "party sane" but seriously keeping you all in the prayers! And just to jump tracks for a moment and share a good news update of my own! My son and daughter-in-law welcomed the first granddaughter into the family last night! Everyone is doing well in spite of this nasty virus! Congrats and continue to stay safe Link to comment Share on other sites More sharing options...
BGleas Posted July 17, 2020 Report Share Posted July 17, 2020 Best wishes to Ayden and sounds like great news! Best wishes to you and your family, Billingsley! Link to comment Share on other sites More sharing options...
Muddy River Posted July 18, 2020 Report Share Posted July 18, 2020 On 7/16/2020 at 12:31 PM, Lostin76 said: A ten pound weight gain is impressive. Sending you guys positive vibes and virtual high five to Ayden. Can't imagine the roller coaster of hope and fear that you guys are most likely experiencing around these visits. If you think a 10 lb weight gain is impressive, I would blow your mind. In all seriousness, cheers to the lot of you. The strength of your entire family is an inspiration. Link to comment Share on other sites More sharing options...
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