Hi my fourth child was diagnosed with semi lobar holoproencephaly. I don’t know much about this diagnosis except all of the different levels and there severity. I am hoping that some moms are willing to reach out and share there personal experience. My son is 4 months and he is very alert but he is experiencing a lot of muscle tension. I know all cases are different but I am hoping that some moms can reach out with related experience. His physician said that I have to wait and see what his development curve will reveal until then I have to wait and see which is very nerve wrecking. I strongly believe in FAITH and Hope. What doctors said that would happen did not happen.
Hello Monica, I honestly have never replied to anyone on this site. Although my son had 3 pediatricians by age of 3 and I had a list of concerns, he was not diagnosed until he was 3 yrs and 9 months…months before brain surgery. Although I knew something was wrong, I was repeatedly told there wasn’t, that he was a boy , that boys develop slower than girls, not to compare , and that every child develops differently. What a blow to learn this diagnoses( this was discovered by accident). ONLY 3% live til delivery since most die in utero. Only 1% live past 6 months old. I am here to tell you that my miracle will be 15 YEARS OLD next month. We left the hospital with a 4 day old baby who could not suck. Yet, no one had concerns other than me. He never crawled as a infant/toddler. Now, He can walk, run, climb, talk, read, write, cook, and even use a sandblaster in the garage. He is animated and hilarious. I admit he is up to 20 dx now. I admit he is reading on a 4th grade level (although they didn’t think he would read and only read 5 words in 3rd grade.)I didn’t ask their opinion though. I confirm he has behavior problems , over 10 doctors, and had wrap around services for about 6 years. He cannot ride a bike, but loves to be in the side car of his dad’s motorcycle. He has transformed me into this wonderful person who now works(professionally and volunteering) in early intervention, special needs, and with autism. It has been a challenge with years occupational therapy, physical therapy, speech therapy, equestrian therapy, etc. Now he is on only a monthly consult for OT and PT. After merely 7 months in equestrian riding, he participated at Penn State Special Olympics winning gold and silver medals. Over the years, he has participated in special needs basketball, flag football, soccer, baseball, gymnastics, horseback riding and in a typical setting martial arts class. He now enjoys tinkering in the garage on the 1949 Ford with his dad. your words : “what doctors said that would happen didn’t happen”. Agreed. My almost 15 year old boy is proof of this statement. I have come to learn that doctors are not gods and that they should be used as tools. if the tool applies use it ;otherwise, put it in your toolbox, you may need it at another time. “for I know the plans I have for you”, declares the Lord, “plans to prosper you and not harm you, plans to give you HOPE and a future” Jeremiah 29:11. I have had that posted since he was diagnosed. I hope I have helped. virginia
This is beautiful!! Happy Mothers Day to all 💙
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Hi my fourth child was diagnosed with semi lobar holoproencephaly. I don’t know much about this diagnosis except all of the different levels and there severity. I am hoping that some moms are willing to reach out and share there personal experience. My son is 4 months and he is very alert but he is experiencing a lot of muscle tension. I know all cases are different but I am hoping that some moms can reach out with related experience. His physician said that I have to wait and see what his development curve will reveal until then I have to wait and see which is very nerve wrecking. I strongly believe in FAITH and Hope. What doctors said that would happen did not happen.
Hello Monica, I honestly have never replied to anyone on this site. Although my son had 3 pediatricians by age of 3 and I had a list of concerns, he was not diagnosed until he was 3 yrs and 9 months…months before brain surgery. Although I knew something was wrong, I was repeatedly told there wasn’t, that he was a boy , that boys develop slower than girls, not to compare , and that every child develops differently. What a blow to learn this diagnoses( this was discovered by accident). ONLY 3% live til delivery since most die in utero. Only 1% live past 6 months old. I am here to tell you that my miracle will be 15 YEARS OLD next month. We left the hospital with a 4 day old baby who could not suck. Yet, no one had concerns other than me. He never crawled as a infant/toddler. Now, He can walk, run, climb, talk, read, write, cook, and even use a sandblaster in the garage. He is animated and hilarious. I admit he is up to 20 dx now. I admit he is reading on a 4th grade level (although they didn’t think he would read and only read 5 words in 3rd grade.)I didn’t ask their opinion though. I confirm he has behavior problems , over 10 doctors, and had wrap around services for about 6 years. He cannot ride a bike, but loves to be in the side car of his dad’s motorcycle. He has transformed me into this wonderful person who now works(professionally and volunteering) in early intervention, special needs, and with autism. It has been a challenge with years occupational therapy, physical therapy, speech therapy, equestrian therapy, etc. Now he is on only a monthly consult for OT and PT. After merely 7 months in equestrian riding, he participated at Penn State Special Olympics winning gold and silver medals. Over the years, he has participated in special needs basketball, flag football, soccer, baseball, gymnastics, horseback riding and in a typical setting martial arts class. He now enjoys tinkering in the garage on the 1949 Ford with his dad. your words : “what doctors said that would happen didn’t happen”. Agreed. My almost 15 year old boy is proof of this statement. I have come to learn that doctors are not gods and that they should be used as tools. if the tool applies use it ;otherwise, put it in your toolbox, you may need it at another time. “for I know the plans I have for you”, declares the Lord, “plans to prosper you and not harm you, plans to give you HOPE and a future” Jeremiah 29:11. I have had that posted since he was diagnosed. I hope I have helped. virginia
This is beautiful!! Happy Mothers Day to all 💙