Sorry I've been posting sparingly lately...just busy with work and everything else. We're good! Except, Lydia woke up this morning with her yucky congestion again!! Poor baby! I have a feeling that is the cause of her decline in appetite...she has been taking about 2 oz at each feeding today. But, the good news is that Dr Alberty is not worried and not interested in looking into a feeding tube for Lydia at this time. He was pleased with her height for weight on the chart, and he also said that we are not slaves to the chart in Lydia's case. The charts are created for typical healthy children, so the numbers don't necessary apply to our very special Lydia. He said that the charts are there to alarm doctors that something is wrong if they don't continue growing on the bell curve...in Lydia's case, we already know something is "not right." So, we will compare her to herself and not to the rest of the healthy population. He was happy with the amount of subcutaneous tissue that she has. That means that her brain is definitely not being malnourished...when we eat, there is a definite order of organs that receive the calories...stomach, liver, brain, etc. and then the muscles and tissues...so, if her tissue looks good, we can assume that her brain is getting the nutrition that it needs. Also, since we already know that her brain growth is below normal, this may have something to do with her overall weight, since your head's weight is a certain percentage of your weight. And he says that since her height for weight looks good...even though her weight is off the chart....we don't want to feed her any more than we are doing now...that would cause her to gain too much weight for her height, and that wouldn't be good for her either. We will keep close ties with him and see him at least every three months to keep tabs on her growth. He said that we are not at all saying that she will never need a G tube...nor that she definitely will at some point...we are just saying that right now, she doesn't need it. I felt so satisfied with these responses...I was hoping to not have the decision left up entirely to me, and he never even really asked if I wanted it...he was sure that she was doing well without it...that, of course, makes me happy!
PT yesterday
Sue-Sue gave Lydia an A+ at her therapy yesterday! She did GREAT! She held up her head for several seconds without tiring...enjoying looking at herself in the mirror. She also did some good work with assisted rolling. And the biggest improvement was that she tolerated the work for a long time without fussing...or shutting down. She was a sweetheart! We will continue to work at home with our homework to keep up her good work....hopefully her cold won't slow her down too much.
Another request for massage....I stayed up watching Randy Pausch with Dianne Sawyer the other night (if you want to be inspired, you have got to watch his "last lecture"...find it online...he has also written a book...he is dying of pancreatic cancer and is sharing his wisdom about life with the world...he is amazing!) Anyway, it was so late that I was going to skip Lydia's massage...she said, "I don't think so mama." As soon as I got all of her clothes off to change her into pajamas, she started cooing at me with those sparkling little eyes...I knew just what she was thinking. I asked, "Do you want a massage?" She let out the loudest, cutest little cackle that she, of course, got her way! She was not going to let me skip her favorite part of the day....and one of my favorites too!
Friday, April 11, 2008
Thursday, April 10, 2008
Pharyngogram Fine
Yesterday morning was our swallow study at the Lake....there were no problems...Lydia swallowed all of the liquids beautifully. We have our follow-up with Dr Alberty tomorrow at 1:30. Lydia's appetite seems to be starting to decrease today...
I'll try to update again after our appt tomorrow.
I'll try to update again after our appt tomorrow.
Monday, April 7, 2008
Fun Day
Audrey and I had a fun time going on a field trip with her class to the Strawberry Patch today. Thank you Aunt Linda and Maw-Maw Grace for keeping the other two girls for us!
I weighed Lydia again this morning and she weighed 14 lbs. 2 1/2 oz. That's +1 oz since yesterday. I'll continue to keep track of it to report to Dr Alberty on Friday.
HELP WANTED:
I really feel awkward about asking for help with the kids because I don't want to overburden anyone or make them feel obligated to say yes. So, I thought this might be a good option...I do need some help with babysitting in the next couple of weeks, so I'll post what I need and if you are interested and able to help, please let me know. :)
Wednesday, April 9th- Lydia's Pharyngogram 8:45
I need someone to keep Audrey and Elise from about 8:00 til about 10:45. This will also involve dropping Elise off at therapy at LSU for 9:00. I expect to be able to pick her back up at 10:30 after Lydia's appt.
Friday, April 11th- Lydia's appt with Dr Alberty 1:30
I need someone to stay with Elise from 1:00 till about 4:15. It's her naptime...and I expect to be able to pick up Audrey from school after Lydia's appt. We usually get home from school a little after 4.
Monday, April 14th- Elise's 1508 eval - EBR school system 8:30
I'd like someone to stay with Lydia and Audrey (or at least just Audrey...I may be able to take Lydia with me...This one is probably not quite as important...I can take Audrey too, but the lady that I spoke to acted as if it would be better if I didn't bring them.) She said it would probably take about 2 hours...so I'll need someone until about 11:00. Lydia has therapy at home at 11:30, so I'll definitely be back by then.
I was also hoping to have a day to go to work to meet about plans for summer trainings...Tues, April 22nd or Tues, April 29th...I'll need someone to pick up Elise from school (BR Speech and Hearing) at 11:00 and stay with her until about 4:00. I plan to just take Lydia with me, and Audrey will be at school.
Please...don't feel obligated to offer...just if you have the time. Most of these things, I can probably do with all of them...I can make it work some way. But, if it sounds like fun to you, and you can help, I really would appreciate. THANKS!
I weighed Lydia again this morning and she weighed 14 lbs. 2 1/2 oz. That's +1 oz since yesterday. I'll continue to keep track of it to report to Dr Alberty on Friday.
HELP WANTED:
I really feel awkward about asking for help with the kids because I don't want to overburden anyone or make them feel obligated to say yes. So, I thought this might be a good option...I do need some help with babysitting in the next couple of weeks, so I'll post what I need and if you are interested and able to help, please let me know. :)
Wednesday, April 9th- Lydia's Pharyngogram 8:45
I need someone to keep Audrey and Elise from about 8:00 til about 10:45. This will also involve dropping Elise off at therapy at LSU for 9:00. I expect to be able to pick her back up at 10:30 after Lydia's appt.
Friday, April 11th- Lydia's appt with Dr Alberty 1:30
I need someone to stay with Elise from 1:00 till about 4:15. It's her naptime...and I expect to be able to pick up Audrey from school after Lydia's appt. We usually get home from school a little after 4.
Monday, April 14th- Elise's 1508 eval - EBR school system 8:30
I'd like someone to stay with Lydia and Audrey (or at least just Audrey...I may be able to take Lydia with me...This one is probably not quite as important...I can take Audrey too, but the lady that I spoke to acted as if it would be better if I didn't bring them.) She said it would probably take about 2 hours...so I'll need someone until about 11:00. Lydia has therapy at home at 11:30, so I'll definitely be back by then.
I was also hoping to have a day to go to work to meet about plans for summer trainings...Tues, April 22nd or Tues, April 29th...I'll need someone to pick up Elise from school (BR Speech and Hearing) at 11:00 and stay with her until about 4:00. I plan to just take Lydia with me, and Audrey will be at school.
Please...don't feel obligated to offer...just if you have the time. Most of these things, I can probably do with all of them...I can make it work some way. But, if it sounds like fun to you, and you can help, I really would appreciate. THANKS!
Sunday, April 6, 2008
Weight disappointment
Lydia is and has been eating very well for the past week or so, so I weighed her yesterday with high hopes to see big numbers...not the case. She weighed 14 lbs. 1 oz. That's only a gain of 1 1/2 oz in 7 days. I'll try to weigh her again today...maybe a fluke?? We'll see.
This week's plans:
Pharyngogram (swallow study) Wednesday 8:45
Appt with Dr Alberty Friday 1:30
This week's plans:
Pharyngogram (swallow study) Wednesday 8:45
Appt with Dr Alberty Friday 1:30
Friday, April 4, 2008
Eating like a champ!
Just to keep you updated...Lydia has continued to take 4 oz at every feeding since yesterday!!! Great news!! I hope she plans to continue this trend! Thanks for your continued prayers!
Have a great weekend!
Have a great weekend!
Thursday, April 3, 2008
Doing Well
Today has been a busy day...Elise and Audrey were off to school with Aunt Becky early this morning...Lydia and I went to her therapy with Susan (PT), then we picked up Elise from school and went for Lydia's blood test at Woman's for her thyroid.
Lydia has been eating great today!!! 4 oz. at every feeding so far! Keep your fingers crossed that this continues! :) She also didn't mind the heel stick for her blood test at all...my adorable little hero!
Prayer request:
My sister-in-law Tiffanie's aunt Kim (who is also our babysitter, Erin's mom) has just been diagnosed with ovarian cancer (as of this week). Please keep her and her family in your prayers. If you are interested in keeping up with her progress, Tiffanie is keeping a journal on the Caring Bridge site at www.caringbridge.org/visit/kimalmendinger .
Lydia has been eating great today!!! 4 oz. at every feeding so far! Keep your fingers crossed that this continues! :) She also didn't mind the heel stick for her blood test at all...my adorable little hero!
Prayer request:
My sister-in-law Tiffanie's aunt Kim (who is also our babysitter, Erin's mom) has just been diagnosed with ovarian cancer (as of this week). Please keep her and her family in your prayers. If you are interested in keeping up with her progress, Tiffanie is keeping a journal on the Caring Bridge site at www.caringbridge.org/visit/kimalmendinger .
Tuesday, April 1, 2008
Today's News
Lydia is still eating pretty well....no less than 3 oz at each feeding. Teresa came today (OT) and we discussed the issue of the feeding tube at length. She gave me some more issues to consider when making our decision...some things I hadn't thought about. We talked about how Lydia is just making it (on some days) with the nutrition that she gets solely from formula...(The amount of baby food that she is taking in is not enough to sustain her at all...I am basically continuing to do it to give her more practice with it so that she will hopefully get better and better at spoon-feeding so that it will provide a greater percentage of her nutrition...right now, there is basically no nutritional value to what she is getting by spoon..she just doesn't eat enough of it.) Anyhow...we talked about what will happen when we wean her from the bottle (which will probably be some time later than a typical child who weans at 12 mos....maybe 15-18 mos.) Will she be able to sustain her nutrition with spoon-feeding/table-feeding and liquids by cup? Good question. A question that we don't know the answer to right now, of course. But, one would predict that she will probably have some difficulties in that area. That would lead us to believe that what Dr Wood said is true...it is inevitable. That being true, it still doesn't make me want to go out and do it this instant when she is still feeding well. I am absolutely ready to do it when I see that she is having a decline...if and when that happens again. Teresa suggested that we go along with the plan as it stands....pharyngogram, follow-up with Alberty, and see the surgeon. We could have everything "on go" so that if (and when) she starts to refuse feeding, we can just make one call and schedule the procedure. I think that is a good plan. I stressed to her how I feel uneasy about the decision being left up to me...If a doctor would say, "Lydia needs a feeding tube...let's schedule it," it would make me feel more comfortable about it. I know I said just a few days ago that I was solid about my decision....I guess you can tell that is not true anymore. We'll get there...
An episode last night:
Lydia was in the living room with Martin when I went to take a bath last night. She had fallen asleep on a pillow. Martin noticed her to have what appeared to be an infantile spasm. He said it looked like a startle...just like the other spasms, but he said it was bigger arm movement than before. It happened 7 times....about 15 seconds apart. The difference between this and the spasms we saw before: she was sleeping, and she fell asleep between each jerk. Dr Hollman had told us that babies don't usually have infantile spasms in their sleep. When I came in and picked her up from him..I noticed that she had diarrhea...that lead us to wonder if maybe she was having stomach pains that caused a startle reflex with each cramp...but, she wasn't crying- that would be odd if she had pain that startled her so much. Another twist: When we saw Dr Schoffner in Atlanta, he said that he had never seen a baby with a normal EEG to have infantile spasms...so, he didn't think that her episodes were infantile spasms...he said he preferred to call them "arm jerks." He also said that the movement we described was not consistent with infantile spasms. I called Dr Hollman's office this morning to talk to her about it, but she was out until next Tuesday....so, I talked to another dr's nurse...Dr Golden said to watch Lydia and let them know if it happened again because they would want to do an EEG. If it happens again, I'll probably call Dr Hollman's cell phone to let her know.
An episode last night:
Lydia was in the living room with Martin when I went to take a bath last night. She had fallen asleep on a pillow. Martin noticed her to have what appeared to be an infantile spasm. He said it looked like a startle...just like the other spasms, but he said it was bigger arm movement than before. It happened 7 times....about 15 seconds apart. The difference between this and the spasms we saw before: she was sleeping, and she fell asleep between each jerk. Dr Hollman had told us that babies don't usually have infantile spasms in their sleep. When I came in and picked her up from him..I noticed that she had diarrhea...that lead us to wonder if maybe she was having stomach pains that caused a startle reflex with each cramp...but, she wasn't crying- that would be odd if she had pain that startled her so much. Another twist: When we saw Dr Schoffner in Atlanta, he said that he had never seen a baby with a normal EEG to have infantile spasms...so, he didn't think that her episodes were infantile spasms...he said he preferred to call them "arm jerks." He also said that the movement we described was not consistent with infantile spasms. I called Dr Hollman's office this morning to talk to her about it, but she was out until next Tuesday....so, I talked to another dr's nurse...Dr Golden said to watch Lydia and let them know if it happened again because they would want to do an EEG. If it happens again, I'll probably call Dr Hollman's cell phone to let her know.
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