Living with HPE
Eric Ryan was born w/ a rare condition, Holoprosencephaly,this is to share our struggles & joys as we live with HPE.
Entry for July 31, 2007
Well, its been forever since I last posted. Alot has happened within the last few months.

We have moved into our own place here in Fresno, which is great! Cant live with the parents forever! Things have been up & down with me & big Eric. I knew that having out our place again would be the real test. Its been a struggle but we getting by. Big Eric is struggling at work & I know that that doesnt help at all. But God placed him there for a reason & like I've told him, if he wasnt meant to be there God would provide something esle. So he's looking for a new job.

Eric Ryan has aslo had his ups & downs. When we 1st moved here in June he was doing so good! He got back to sleeping all night & seizures were at an all time low.

Im not sure if I mentioned but we started seeing a GI doctor. He is handling all his nutricion & stomache issues. We added an overnight feeding & guess what....Eric Ryan hit 20lbs last week!!! He starting to get heavy, but I love it. I can squeeze him & not feel like Im gonna break him!

We went tothe Endo. the other day. She explained to me that his growth hormone levels are normal. I was in total shock since Ryan is small for his age. But she said that he is small due to his prematurity & mainly because of his lack of calories. I felt bad, as if I was starving him. But I was only doing what the dr's told me. She told me no I wasnt. The dr was very happy with his growth during the last 3 mths.

By the way, Eric Ryan turned 3yrs!!!!

I was so happy. My baby is officially a toddler. On his birthday we got a cake & just had a private

 party just us.

The following weekend we had a party with all the family at a local park. This park was great becasue it had special equipment for the handicap. Eric Ryan had a great day & was awake his whole party! He got money & some cool clothes.

Which reminds me..he will be starting pre school August 20th!! Im really excited about that too!



We had a pretty rough weekend. Ryan had been having trouble breathing during his siezures. I called the neurologist & they increased his meds. That was on a Thursday. That Sunday I was really scared because it didnt seem to help & his breathing was getting worse. We gave him his emergency seizure med & it didn help. So we packed up & headed for the ER. Right before we got there Ryan's breathing calmed & he fell asleep. The med had kicked in. We took him home & monitored him all night.

Monday we went to the doctors but it was for a weight check. Ryan was breathing normal  no signs of trouble.

Tuesday is when we went to the endo & he had about 4 episodes of breathing troubles. Wednesday seemed the same but Thursday it got worse. Up till then the episodes would last about 15-20 secs during what looked like a seizure. Well Thursday it lasted for 2hrs in the morning then again about noon. I took him to the dr. & his oxygen level was in low 90's. It turned out he had somekind of tracial infection. We started him on antibiotics & giving breathing treatments every 4hrs. The dr was on standby the following weekend because he agreed not to hospitalize us as long as Ryan's oxygen levels stayed in the 90's

. Well today is Tuesday & Ryan has gotten so much better! No hospital!!

He back in a good mood & sleeping again!

His sister Jazmin has been staying with us this summer. Shes has been alot of help.

Well its getting late & Im tired so I'll try & post more ofter.

2007-08-01 06:24:51 GMT
Comments (2 total)
Author:Anonymous
hi, i was just surfing for my report on HPE in the Philippines, i am a clinical genetics fellow here in Univ of the Philippines-National inst of health...i am encouraged by your stories. thank you so much. We are indeed fearfully and wonderfully made. i always tell this as i counsel my patients in the philippines. God bless you, eric and your whole family! -Anjie Bautista
--angelita bautista
<mailto:anjieb2004@yahoo.com>
2007-08-07 09:45:58 GMT
Author:Anonymous
hi, i was just surfing for my report on HPE in the Philippines, i am a clinical genetics fellow here in Univ of the Philippines-National inst of health...i am encouraged by your stories. thank you so much. We are indeed fearfully and wonderfully made. i always tell this as i counsel my patients in the philippines. God bless you, eric and your whole family! -Anjie Bautista
--angelita bautista
<mailto:anjieb2004@yahoo.com>
2007-08-07 09:47:18 GMT
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