at home. Hubby takes the night shift with little man. After many months of having a sick child, while still caring for our other 3 boys; we have become a well-oiled (although admittedly sometimes squeaky) machine. And right now, I take the day shift with little man at the hospital so I can be there to talk with the doctors; and he takes the night shift so he can be there for Little Man. This allows all our boys to get time with each of us as well. Cuddle time, bedtime stories and bedtime prayers with mom right before bed are critical for the 3 big brothers. Playtime and cuddle time with daddy before bed are essential for little man. But we miss Little Man at home. He is anxious to get home too...hopefully tomorrow afternoon...
Little man has not had good weight gain yet. I already could have told you he wasn't going to. He drinks in adequate calories but his body isn't absorbing them all because of his gut inflammation, so this will continue to be a cyclic affect until we can rid his body of the inflammation. He started to have a rash on his back today- just another sign of the inflammatory triggers in his body. He also looks more pale today.
Our allergist at CHOP has been calling to check on him, this makes us feel very supported and is helping with a lot of the questions we/the doctors here have about FPIES. We have learned so much on this journey so far, I continue to look to learn more- not only to help our son (who still needs so much help right now) but to help learn and raise awareness of this roller coaster ride.
Joy, Jeremy and boys.....I have been following your little man's story since you started updating us on FB. I want you all to know that I think and pray for you often. I was updating Kyle on your situation, telling him that you were back in the hospital with the boy, and he reminded me of what we went through with Emma. Believe me....my mama bear came out many times during those months!
ReplyDeleteWe know first hand how frustrating it can be when the medical community you should be able to trust won't listen. We experienced similar frustrations when trying to obtain a diagnosis and treatment for Emma's breathing problems when she was a baby. At one point I was called a first time parent who was "over exaggerating" the potential seriousness of her symptoms. As a life long asthmatic who had been hospitalized a good portion of my 7th grade school year, I knew first hand how serious asthma could be. Once we found our wonderful specialist, he quickly diagnosed her at 8 months with severe asthma, found that she had sustained lung damage from the months she was left untreated, and immediately implemented a rigorous treatment plan. She is now a VERY active 9 year old. She still has good days and bad days, but we always have a game plan when the bad days arrive.
Stay strong and keep on fighting for your little man! We are thinking of you!
You and your family are in my thoughts and prayers. We know first hand how difficult this syndrome can be and the daily struggles you encounter, especially having older children. We have a similar story and live with the daily fear that you and your family do. We are praying for your "little man" and you and your husband. Find strength within eachother. Keeping strong can be hard but you have done so well managing all that do for ALL of your children. Good Luck to you and your family. We will continue to follow "little man's" prgress.
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