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 September 23, 2006
Last time I wrote I said how I was going to take Ryan for his 1st walk. Well it was to hot for him during the day so I waited till the evening. It worked out perfect because my nephews Victor & JoJo were here & they got to go with us & my dad, Grandpa Art. We walked I dont know about 6-7 blocks to a neighborhood park. At first Ryan was upset, didnt want to be in his stroller. Then after about a blo0ck he calmed down & started looking around. The weather was perfect, nice & fresh. We headed home when It started to get dark, but Ryan loved it & so did I.

Last night my little sister Amanda & her kids came over & my dad bar-b-qued. Ryan was fussy all day. As soon as I took him outside he calmed down & soon fell asleep. He slept in my moms, Grandma Norma, arms for about 30mins. Then I took over after I ate. It was so nice. Another fresh evening & there were no mosquitos! It had been such a long day & once Ryan realized we were inside again, he woke up & was fussy for a few hrs. I was so tired I layed him in his crib & fell asleep. I really didnt mean to but when I woke up my mom had him. That was really nice, shes been doing that for me most nights. My mom will get him when he starts crying & she sees Im asleep.

It was a long day for a few reasons. First I had to be at the SSA before the crowd & the doors opened at 8:30am. I couldnt find the place & was irritated. But thank God I found it in enough time. Amanda came over to watch Ryan. Before I went inside she calls, Ryan pulled out his g-tube! She had never changed it before or anything so I had to step her through it. She later told me she was so scared but I have to give her credit for sounding really calm! About an hour after I got home, he pulled it out again! Then since he;s still really fussy I start thinking that maybe he has an ear infection. I call the pediatrican but the office was closing. So I call my cousin Missy who works at a clinic here in town. Even though Ryans info still wasnt in the system she took us in anyway without charging. To find out that nothing was wrong.

Well, before I put him in his crib, I tried giving him his pacifier. I realized he was trying to chew on it. So, I put a glove on & started feeling aound his gums.  On the lower right gum I felt some pokeys. After giving tylenol & massaging his gums he fell asleep. I guess he woke up soon after cause thats when mom got him.

After I got him from mom, he feel asleep & slept most of the night & morning.

Then today I took Ryan to my cousin Jessicas girls birthday party. It was really nice. Ryan just loved being outside! He was so good. Im really happy I was able to bring him to Ca. I am really starting to believe it was a good move for him. All kids need to enjoy the outdoors even if they have medical problems, probably even more.



2006-09-24 04:08:19 GMT
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