Well we had our Follow up appointments last week and good news for our little man.
He had his MRI and we are still waiting for results on that and should receive them next week. As far as his kidney reflux his urologist said that its still pretty severe but it has improved. They will do surgery on that when he is about 18-24 months. What they will do is re-implant ureter into the bladder and bypass the kidney so its still functional but yet it will take care of the reflux. Modern medicine is amazing ! But our Lord is greater, they think that there may be the possibility of another kidney;it may be small and if it is it would not show up on an ultrasound so they would like to do some type of scan in the future for that. They said that the one kidney he has is larger than should be and that's why they are suspecting maybe there may be a second one.
Our GI docs are very impressed with his progress and they want to get him to a point to transition off of the TPN (liquid IV nutrition) and they think he is getting close to do that. I told Dr Byrne that if we got the line out of his chest that
I could do tube feedings forever and he looked at us and told us he didn't think we were going to have to do that. Praise the Lord! He is so good!
Joel physicaly is on the move, no leaving him alone for a minute. He's crawling from one end of the house to the other. Pulling himself up on everything and letting go and standing alone for about 7 seconds.
The greatest miracle of all amongst everything else is he has started drinking a bottle!!!! Yes, sucking and swallowing they said that he may never do that since he didn't learn it at birth but he continues to amaze us. It's wonderful to finally feed my son as naturally as I can at this point and it brings tears to my eyes everytime I see him sucking his bottle. He sucked 17 cc's the other night. Now mind you I do have to bribe him by watching cartoons especially CURIOUS GEORGE but whatever works. Hehe
Thank you for all the prayers and will try to keep you all updated more frequently
Thursday, August 28, 2008
Sunday, August 17, 2008
Almost 9 months without Hospital visit
Well, we made it almost 9 months without being admitted to the hospital and
3months without having to see our pediatrician. The week of Aug. 5th Joel
ended up with a gut bug and a UTI Urinary Tract Infection that gave us one week
in the hospital and 2-weeks on IV antibiotics. He ended up with Ecoli of all things in his central line and blood stream. It came from his urine they said and he did clear it.
Being in the hospital now is a little more challenging than it was 9 months ago with him crawling all over and wanting to be mobile. His nurses (operative word nurses ) not just one loaned him an activity saucer which he loved. You could hear him through the who pediatric floor and they new when he was awake from his naps. Joel manages to flirt with every nurse he has and he ended up with the whole wing to himself and 4 nurses in his room just googling over him. (just broke his heart to have all that attention)!!
He's doing very well, crawling all over and trying to stand by himself and does for about 1/2 a sec. and then plop on the floor.
Joel is just amazing He has now decided that a bottle isn't so bad and at the most can suck on a bottle and drink between 5-12 cc's of formula by mouth. This is huge for him as he wouldn't even let near his head 6months ago. Now he watches curious george which we all now know by heart even his sister (Ashley who narrates it for us while its on) I sit on the floor with him and we will watch curious George as I feed him his bottle. Its such a satisfying thing to be able to feed him some what naturally. It brings tears to our eyes as we see what the Lord has done for us.
He still has trouble swallowing pureed stage 2 baby foods and will it some crunchy things but only if its tiny, tiny bites and then he will still gag some.
We go up to OSHU this week for follow up appointments with GI, urology , and have an MRI done of his heart to make sure that the 2nd aortic valve isn't closing off the esophagus. We will also meet with urology to see if he has to have surgery on the second eureter and to have his circumcision done and they have said this will be done on an outpatient basis.
We will be home Friday evening and I will up date this weekend.
Enough for now I need to get ready for bed and start thinking of all the things we will need for the trip up. Its amazing how much we have to pack for him even though its just 2 days.
3months without having to see our pediatrician. The week of Aug. 5th Joel
ended up with a gut bug and a UTI Urinary Tract Infection that gave us one week
in the hospital and 2-weeks on IV antibiotics. He ended up with Ecoli of all things in his central line and blood stream. It came from his urine they said and he did clear it.
Being in the hospital now is a little more challenging than it was 9 months ago with him crawling all over and wanting to be mobile. His nurses (operative word nurses ) not just one loaned him an activity saucer which he loved. You could hear him through the who pediatric floor and they new when he was awake from his naps. Joel manages to flirt with every nurse he has and he ended up with the whole wing to himself and 4 nurses in his room just googling over him. (just broke his heart to have all that attention)!!
He's doing very well, crawling all over and trying to stand by himself and does for about 1/2 a sec. and then plop on the floor.
Joel is just amazing He has now decided that a bottle isn't so bad and at the most can suck on a bottle and drink between 5-12 cc's of formula by mouth. This is huge for him as he wouldn't even let near his head 6months ago. Now he watches curious george which we all now know by heart even his sister (Ashley who narrates it for us while its on) I sit on the floor with him and we will watch curious George as I feed him his bottle. Its such a satisfying thing to be able to feed him some what naturally. It brings tears to our eyes as we see what the Lord has done for us.
He still has trouble swallowing pureed stage 2 baby foods and will it some crunchy things but only if its tiny, tiny bites and then he will still gag some.
We go up to OSHU this week for follow up appointments with GI, urology , and have an MRI done of his heart to make sure that the 2nd aortic valve isn't closing off the esophagus. We will also meet with urology to see if he has to have surgery on the second eureter and to have his circumcision done and they have said this will be done on an outpatient basis.
We will be home Friday evening and I will up date this weekend.
Enough for now I need to get ready for bed and start thinking of all the things we will need for the trip up. Its amazing how much we have to pack for him even though its just 2 days.
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