FINALLY!!! I was able to upload some pictures to the blog. So much has been going on lately, that I don't even know where to start. I'm sure there are many things I will leave out but I'll fill you in as much as I can. First, we took the kids to the farm show in Harrisburg. This is the first time Lily has ever been there and all three kids really enjoyed themselves.
Lily and Raymond especially likes the cows.
This cow kept mooing which made Lily laugh and laugh.
We also looked at the chickens, ducks and roosters.
Don't forget about the bunnies!
Isabella liked looking at the bee's. She talked to the man at the table about for for awhile. He told her a lot about the bee's and she asked a lot of questions.
After that we went to the butterfly tent. The girls and I went in while Daddy waited outside with Raymond. You aren't able to take strollers in and I don't think Raymond would like it anyway.
Lily sure enjoyed it!
My big girl!
We all had lots of fun.
Isabella was invited to a birthday party of a little girl in her class named Logan. This wasn't the first party she was invited to but it was the first party I let her attend. Isabella talks about her a lot.
These are the only three pictures I snapped.
Isabella and all her little friends had a blast. There was a whole lot of laughing and screaming going on for those three hours!
I'm trying to think of what else to tell you. We have been very busy with lots of appointments. Raymond's therapy is back to normal...sort of. Some of his therapists have been sick so several sessions had to be cancelled. Lily's therapy continues to go well. I'll try to post a therapy update this Friday. It's been awhile for one of those.
Back on January 8th, Raymond had an appointment at the feeding clinic. This is the number one thing I get asked about Raymond. When is he going to eat? Why can't he eat? Etc. I don't know why but lately it's been annoying me being asked those questions. I also think it has to do with other people when we are out in public. For example, when we go to the grocery store, at the deli counter and the kids are offered a piece of cheese. The girls get one and Raymond doesn't. When we go out to dinner (which isn't often) and Raymond is the only one not eating. People seem to want an explanation. I shouldn't have to get into it and 99% of the time I don't...because that leads to 50 more questions. So for those who are curious, here are a few highlights from the doctor's notes from that appointment.
"-Continues to eat essentially nothing. Shows interest, but does not typically allow food in his mouth. Currently receives Nutren Jr. w/fiber, 4 boxes (32oz/day). Has no trouble with the 4 bolus feeds/day.
- I fed Raymond today for 10 minutes. I presented multiple bites of yogurt which he accepted willingly. He expelled every bite multiple times, but did swallow 12 grams of yogurt."
One of the major concerns that Dr. Williams discussed with me was Raymond's growth. He said that Raymond has weighed between 24 and 26 pounds for the past 2, almost 2 1/2 years. Believe it or not, that wasn't the concerning thing. What was alarming to him is that Raymond has only grown about a centimeter in height that entire time. He said he doesn't think anything is physically wrong with Raymond that he is not growing. Dr. Williams said he believes it is totally a result of his lack of nutrition. I must say that I agree. We plan to have Raymond go into the in-patient feeding program in June once Isabella is out of school. Hopefully this will be just the thing he needs.
Raymond also had an EEG scheduled last week. His neurologist wanted to see the seizure activity in Raymond's brain. I explained to her that Raymond's previous neurologist never scheduled EEG's because Raymond is NOT cooperative for them. She insisted. So we went. I think Raymond thought he was having an echo cardiogram because he climbed right up on the table, laid down and put his hands behind his head. It wasn't until she started to touch his head that things went downhill very quickly. She called in another nurse, and the two of us attempted to hold him down while she put the probes on his head. After almost two hours, with no success, we were all exhausted. So the test was never done. I'm sure Dr. Zinger is not going to be happy but until she witnesses Raymond's resistance first hand, she will never understand.
Back on January 8th, Raymond had an appointment at the feeding clinic. This is the number one thing I get asked about Raymond. When is he going to eat? Why can't he eat? Etc. I don't know why but lately it's been annoying me being asked those questions. I also think it has to do with other people when we are out in public. For example, when we go to the grocery store, at the deli counter and the kids are offered a piece of cheese. The girls get one and Raymond doesn't. When we go out to dinner (which isn't often) and Raymond is the only one not eating. People seem to want an explanation. I shouldn't have to get into it and 99% of the time I don't...because that leads to 50 more questions. So for those who are curious, here are a few highlights from the doctor's notes from that appointment.
"-Continues to eat essentially nothing. Shows interest, but does not typically allow food in his mouth. Currently receives Nutren Jr. w/fiber, 4 boxes (32oz/day). Has no trouble with the 4 bolus feeds/day.
- I fed Raymond today for 10 minutes. I presented multiple bites of yogurt which he accepted willingly. He expelled every bite multiple times, but did swallow 12 grams of yogurt."
One of the major concerns that Dr. Williams discussed with me was Raymond's growth. He said that Raymond has weighed between 24 and 26 pounds for the past 2, almost 2 1/2 years. Believe it or not, that wasn't the concerning thing. What was alarming to him is that Raymond has only grown about a centimeter in height that entire time. He said he doesn't think anything is physically wrong with Raymond that he is not growing. Dr. Williams said he believes it is totally a result of his lack of nutrition. I must say that I agree. We plan to have Raymond go into the in-patient feeding program in June once Isabella is out of school. Hopefully this will be just the thing he needs.
Raymond also had an EEG scheduled last week. His neurologist wanted to see the seizure activity in Raymond's brain. I explained to her that Raymond's previous neurologist never scheduled EEG's because Raymond is NOT cooperative for them. She insisted. So we went. I think Raymond thought he was having an echo cardiogram because he climbed right up on the table, laid down and put his hands behind his head. It wasn't until she started to touch his head that things went downhill very quickly. She called in another nurse, and the two of us attempted to hold him down while she put the probes on his head. After almost two hours, with no success, we were all exhausted. So the test was never done. I'm sure Dr. Zinger is not going to be happy but until she witnesses Raymond's resistance first hand, she will never understand.
Yesterday Raymond had a dentist appointment. His dentist is a wonderful man. He is so good and patient with Raymond. Raymond was not very interested in having his teeth examined but Dr. Ross was able to see what he needed. Everything looks good and we don't have to go back for another 6 months. That reminds me, I need to schedule a dentist appointment for Isabella.
Until Next Time!
Lots of Love,
1 comment:
So much information here that it is hard for me to comment. Loved the farm show pictures. I hope and pray Raymond will be able to eat and grow! I know how much more active he is in past year so was not surprised about lack of weight gain, but was surprised how little he grew in height. I love them all soooo much!!
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