Emma had several of them this week & they went great. Monday she was back in therapy after having two weeks off due to her therapist being out of the office & boy did we have a lot to show Leslie. Emma was pulling up on everything, standing & playing + cruising on all the furniture. Leslie even got Emma to crawl all the way down the hall & back + walk behind the push toy several times. Emma also is transitioning from one piece of furniture to another so it will not be long before our little one is walking. Emma has been trying for several weeks to stand up on her own in the middle of the floor but she hasn't quite figured out how to do it yet.
Wednesday she went to the pedi for some shots she was behind on & she weighs 18 lbs, 7 oz which we were just thrilled about. That means she has gained 1.5 lbs since she left the hospital, Dec 10, amazing. I guess that Pediasure & her fixed heart are really making a huge difference for Emma. Speaking of Pediasure, she is completely off bottles now & is only drinking from her cup now. I have been weening her off since we got home the hospital & offering her Pediasure in her cup at mealtime which worked like a charm. She had her last bottle Thursday morning & there is no turning back. She doesn't seem to miss them at all (she really started to love them after all this time) & just enhales her Pediasure. Its higher in calories than the formula we were mixing & it will help her put on the pounds faster than whole milk. Plus Emma still isn't eating as much solids as she should so Pediasure also fills in those nutritional gaps. MUSC was the ones who originally suggested it to us before we left & Emma's pedi, Dr. K thought it was a good idea too.
Thursday Emma had a follow up with her cardiologist & that visit went great too. Dr. O said he could tell Emma had gained weight as soon as he saw her without even looking at her chart to see how much she had gained. He of course was thrilled. He took her off her Lasix & she doesn't have to go back for 6 months, can you believe that. YAY!!!
The last follow-up appointment was on Friday with the hand surgeon. Many of you may not know but Emma also has a congential hand defect. On her left hand, she actually has 5 fingers, instead of four fingers & a thumb. It sits up higher & is thin like a finger & it has 3 joints instead of just two. Now she currently using it just like a thumb & doesn't seem to bother her too much except when she trys to pick up larger objects or balls with her left hand. I have been teaching her for a long time if she seems to be struggling to "use both hands" & she knows what that means & will do just that. Now that her heart is fixed we can take care of her hand & she will no longer have to do that.
So Dr. G is going to spin the finger around to move it into position more like a thumb, add additional skin to her hand so she can spread it like a thumb then take a tendon from one of her middle fingers & move it to the thumb so it can be aposable. It sounds like a lot but Dr. G says it a very common surgery & should only take 1-2 hours total. He said it may take longer to actually get her prepped, sleep & to put her cast on at the end then to do the surgery. She will only have to wear the cast for 3 weeks & then that should be all the surgeries for Emma, or at least that is all we know about. We hate to put her through another one but at least its out-patient & he really wants to do it before she turns 2 so we will probably schedule it for mid to late Feb.
Wednesday she went to the pedi for some shots she was behind on & she weighs 18 lbs, 7 oz which we were just thrilled about. That means she has gained 1.5 lbs since she left the hospital, Dec 10, amazing. I guess that Pediasure & her fixed heart are really making a huge difference for Emma. Speaking of Pediasure, she is completely off bottles now & is only drinking from her cup now. I have been weening her off since we got home the hospital & offering her Pediasure in her cup at mealtime which worked like a charm. She had her last bottle Thursday morning & there is no turning back. She doesn't seem to miss them at all (she really started to love them after all this time) & just enhales her Pediasure. Its higher in calories than the formula we were mixing & it will help her put on the pounds faster than whole milk. Plus Emma still isn't eating as much solids as she should so Pediasure also fills in those nutritional gaps. MUSC was the ones who originally suggested it to us before we left & Emma's pedi, Dr. K thought it was a good idea too.
Thursday Emma had a follow up with her cardiologist & that visit went great too. Dr. O said he could tell Emma had gained weight as soon as he saw her without even looking at her chart to see how much she had gained. He of course was thrilled. He took her off her Lasix & she doesn't have to go back for 6 months, can you believe that. YAY!!!
The last follow-up appointment was on Friday with the hand surgeon. Many of you may not know but Emma also has a congential hand defect. On her left hand, she actually has 5 fingers, instead of four fingers & a thumb. It sits up higher & is thin like a finger & it has 3 joints instead of just two. Now she currently using it just like a thumb & doesn't seem to bother her too much except when she trys to pick up larger objects or balls with her left hand. I have been teaching her for a long time if she seems to be struggling to "use both hands" & she knows what that means & will do just that. Now that her heart is fixed we can take care of her hand & she will no longer have to do that.
So Dr. G is going to spin the finger around to move it into position more like a thumb, add additional skin to her hand so she can spread it like a thumb then take a tendon from one of her middle fingers & move it to the thumb so it can be aposable. It sounds like a lot but Dr. G says it a very common surgery & should only take 1-2 hours total. He said it may take longer to actually get her prepped, sleep & to put her cast on at the end then to do the surgery. She will only have to wear the cast for 3 weeks & then that should be all the surgeries for Emma, or at least that is all we know about. We hate to put her through another one but at least its out-patient & he really wants to do it before she turns 2 so we will probably schedule it for mid to late Feb.
2 comments:
So, did I understand correctly, she has an additional finger? Somehow I didn't know that! Or, is he going to make that particular digit function as it should... :) I woke up with a massive headache this morning... and not thinking clearly...
She does have 5 digits on her left hand but hers are 5 fingers with 3 joints in each instead of 4 fingers & a thumb. Plus her first finger/thumb sits up high like a finger would & not down lower where a thumb should be. He is going to spin the first finger/thumb & position it more where it should be & then take a tendon from one of her middle fingers & add it to her repositioned thumb so it will function as a thumb. Her thumb will mostly likely always be thin & have 3 joints instead of two but at least it will function properly & be in the correct placement on her hand. Did that make more sense???
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