Lydia must be feeling better because she was so happy today. We saw Susan this morning, and we went over the massage techniques that I missed from the last two classes...that didn't hurt to put Lydia in a good mood. She was so relaxed and happy...smiling, cooing, cackling! :) She also stayed awake and happy for the whole ride to and from therapy. What a treat! I think that her feedings are getting better and better. Hooray! Let's pray that it continues to get better...we all know how she can do well for weeks and then fall back into the same problems.
No shot tomorrow! Yeah!!!
Thursday, January 31, 2008
Wednesday, January 30, 2008
Doing OK
Sorry that I haven't updated in a few days...I have heard from so many people that they've been checking this blog daily. I am very touched that so many people are interested in our story. I even heard that someone made a phone call to find out if everything was ok because I hadn't posted anything in a few days....oops! We're OK! Just a little tired. Little Lydia has a different time clock these days...I've been pooping out before I get a chance to get to the computer sometimes. I am hoping that she re-programs that little clock of hers soon...though I realize, it is not about me. I know it's not fun for her either. I think the congestion is waking her at night. It seems to be getting better...yeah! But, she's still not completely over it. Audrey is just about back to normal. Elise's ear infection is hopefully getting better...she was a bit cranky for a few days, but today was better. We'll see Dr Wood again next week to re-check her ears.
Blood test fiascos:
I know I posted about Lydia's blood test at the Lake last week ...I don't think I updated more after that....they called me the next day to say that they didn't get enough blood...some of it clotted or something. I asked if we could just get the home health nurse to do it so that we wouldn't have to go back...it worked out that the nurse who was drawing blood this Monday anyway for the routine Chem 7 would also do the TSH and Free T4. Well, the nurse today walked in and said that she had to draw again because Monday's nurse didn't get enough...4 sticks in 2 weeks. Hopefully, they can start to get it right the first time soon...
Super news: We will soon get to skip a shot day!!! Friday will be her first day without a shot in a month. Thank God...her little thighs could use a break...sometimes it's hard to get the bandaid in right spot because you can see so many little needle spots on her legs. After Friday, we will begin the weaning process...one shot every other day... Also, the dose will be cut in half every week. The end of February will be her last shot...you will definitely hear from me on that day!! Then, she is not allowed to have any immunizations for 6 months after that...good for her!! Dr Hollman says that immunizations are for healthy people, and those of us who are not so healthy have to rely on the healthy people to keep their immunizations up to date. I guess after the six months, she'll have to begin catching up...she hasn't even had her 4 month shots yet.
Feedings seem to be going a little better. She is finishing 4 oz in about 15 minutes now (most of the time). That is awesome!!
I am no longer concerned about weight at all...Each time she's been weighed, she is steadily gaining. Today she weighed 12 lbs. 10.5 oz.!! I'm beginning to think that the nurse's scale may have been off on the day that her weight looked to be dropping. Each nurse has their own scale, and we pretty much get a different nurse every day.
More fun news about Elise:
Tonight before bedtime, I asked Elise if she wanted some water...she said, "No..am.....mam" I was so excited....I haven't even tried to teach her to say "no mam" and "yes mam." I figured we'd work more on nouns and verbs for now, and teach manners after the rest falls into place. She's way ahead of me!
Grateful...I am so grateful these days about all of the good in my life. I was driving to Martin's game last night just feeling such a full heart! I've said to some old friends that God has a way of bringing people together, or back together. I have felt so connected to people through this blog and through email about Lydia's life that I am overcome with gratefulness. So many people have offered so much help to us...I'm learning because I've been told by several different people...that their help to us makes them feel good. I am always a little hesitant to ask or accept because I don't want to inconvenience anyone, but I feel better about it knowing that it is doing something good for them too. To my old friends at Brusly Elementary...you can't imagine how touched I am by your overly generous act of supreme kindness...a gesture that was -no doubt- spearheaded by Allison Kirkland. Allison- I have been so encouraged by your kind heart...thank you for all of your care and concern and your encouraging words. I promise you all that Lydia and I will come by for a visit soon...we'd like to thank you in person. I know that you all know that you did not have to do that...and so my appreciation is very sincere and heartfelt.
Blood test fiascos:
I know I posted about Lydia's blood test at the Lake last week ...I don't think I updated more after that....they called me the next day to say that they didn't get enough blood...some of it clotted or something. I asked if we could just get the home health nurse to do it so that we wouldn't have to go back...it worked out that the nurse who was drawing blood this Monday anyway for the routine Chem 7 would also do the TSH and Free T4. Well, the nurse today walked in and said that she had to draw again because Monday's nurse didn't get enough...4 sticks in 2 weeks. Hopefully, they can start to get it right the first time soon...
Super news: We will soon get to skip a shot day!!! Friday will be her first day without a shot in a month. Thank God...her little thighs could use a break...sometimes it's hard to get the bandaid in right spot because you can see so many little needle spots on her legs. After Friday, we will begin the weaning process...one shot every other day... Also, the dose will be cut in half every week. The end of February will be her last shot...you will definitely hear from me on that day!! Then, she is not allowed to have any immunizations for 6 months after that...good for her!! Dr Hollman says that immunizations are for healthy people, and those of us who are not so healthy have to rely on the healthy people to keep their immunizations up to date. I guess after the six months, she'll have to begin catching up...she hasn't even had her 4 month shots yet.
Feedings seem to be going a little better. She is finishing 4 oz in about 15 minutes now (most of the time). That is awesome!!
I am no longer concerned about weight at all...Each time she's been weighed, she is steadily gaining. Today she weighed 12 lbs. 10.5 oz.!! I'm beginning to think that the nurse's scale may have been off on the day that her weight looked to be dropping. Each nurse has their own scale, and we pretty much get a different nurse every day.
More fun news about Elise:
Tonight before bedtime, I asked Elise if she wanted some water...she said, "No..am.....mam" I was so excited....I haven't even tried to teach her to say "no mam" and "yes mam." I figured we'd work more on nouns and verbs for now, and teach manners after the rest falls into place. She's way ahead of me!
Grateful...I am so grateful these days about all of the good in my life. I was driving to Martin's game last night just feeling such a full heart! I've said to some old friends that God has a way of bringing people together, or back together. I have felt so connected to people through this blog and through email about Lydia's life that I am overcome with gratefulness. So many people have offered so much help to us...I'm learning because I've been told by several different people...that their help to us makes them feel good. I am always a little hesitant to ask or accept because I don't want to inconvenience anyone, but I feel better about it knowing that it is doing something good for them too. To my old friends at Brusly Elementary...you can't imagine how touched I am by your overly generous act of supreme kindness...a gesture that was -no doubt- spearheaded by Allison Kirkland. Allison- I have been so encouraged by your kind heart...thank you for all of your care and concern and your encouraging words. I promise you all that Lydia and I will come by for a visit soon...we'd like to thank you in person. I know that you all know that you did not have to do that...and so my appreciation is very sincere and heartfelt.
Sunday, January 27, 2008
Our Baby Einstein
Lydia's congestion seems to be about the same...though it seems better at times, it tends to get worse again at different times. Hopefully we'll see an upswing soon. Since the congestion started, she has not been smiling or cooing very much (who can blame her?). But, we've started a routine of letting her watch the Baby Einstein video at night between her Prevacid and her last bottle. She absolutely loves it! Last night, she was talking, cooing, cackling...it was wonderful! Martin and I decided that there is no better sound in the world than a happy Lydia. Her feedings have seemed about the same, maybe a little better. I'm going to keep watching her closely...it is so hard to tell if it might be the congestion that is causing her discomfort while she eats too. I'll look into GI options if needed this week.
Audrey seems to be feeling a lot better...Elise- still a little cranky at times today, just not herself. Hopefully her medicine will have her feeling better soon.
Audrey seems to be feeling a lot better...Elise- still a little cranky at times today, just not herself. Hopefully her medicine will have her feeling better soon.
Saturday, January 26, 2008
And so it continues
Though Audrey and Elise both seem to be feeling at least a little bit better, Lydia is feeling horrible. It is unbelievable how congested she gets...it sounds like an old man's snore while she's breathing. Unfortunately, we had to skip the massage class again this week. I called Susan this morning, and she said she'd teach me what we missed at our next PT visit. Please help us pray for continued healing. :)
Friday, January 25, 2008
Sick girls
Yes...all three girls woke up Wednesday morning with stuffy/runny noses. Poor Lydia's breathing can be heard from down the street! Audrey woke me up at 5 am this morning saying..."I can't breathe!" Elise has had the brunt of it...took her to the dr this afternoon for an ear infection. She's now on an antibiotic and ear drops...hopefully they'll all feel better soon.
Lydia's weight is less of a concern...I talked to Dr Wood about it today. He is not concerned at all since she is showing nice gain on the growth chart...she had actually had a jump on the chart at the last visit. He said that I shouldn't be so concerned with the amount of weight she is gaining over short periods of time anymore...like we were when she was much younger. As long as she is showing growth on the chart, he's happy. If he's happy, I'm happy.
I am beginning to think more and more that Lydia's pain while eating is due to gas. Teresa and I talked a lot about this at our visit on Wed. I have been keeping notes about her feedings...she always seems to cry more when she is having trouble burping. The more she burps during a feeding, the less she cries....though she still usually cries some. I'm trying to use Mylicon more with her to try to relieve some of the gas. She really needs to burp every ounce to be at least a little comfortable. I'm not really sure about the effect of the Mylicon yet...I'm going to keep trying it....though Dr Alberty didn't hold much stock in it. I talked to Dr Wood about the possibility of seeing Dr Khoshoo in New Orleans for more ideas...he's another GI doctor. Dr Wood spoke so highly of him...moreso than I've heard him talk about any other doctor....he said that he is very smart and has a very caring touch. He sounds a lot like Dr Wood. Dr Wood said that Dr Khoshoo would probably even call us at home...like he does often. We have been so blessed to be in Dr Wood's care...I would trust anyone that he so highly recommends.
Opthamologist visit yesterday:
Dr Williams saw some improvement with Lydia...she said she noticed right away that she was more visually attentive than the last time we saw her. We discussed her preference of looking to the right as opposed to the left...she thought it was more of a torticollis issue than a preferred field of vision issue. She saw that even when her head was turned to the right, she would still sometimes shift her eyes to the left to follow an object. She also thought that there was no reason to think that her field of vision would be better on one side versus the other...no sign of stroke or anything else that would impair it. She thought that any delay that she has in her vision will ultimately be a neurological issue...not a vision problem. I told her about some of the possibilities that Dr Superneau had suggested, and she said to let her know if there was any further testing of any syndromes that had eye-related problems associated with it...she would check for anything that Dr Superneau wanted to her to specifically look for. She wants to see her again in three months...she'll dilute her eyes again (like the first visit) to check for any changes. Until then...she will be on maternity leave...it was her last day before taking off. We wish her luck.
Lydia's weight is less of a concern...I talked to Dr Wood about it today. He is not concerned at all since she is showing nice gain on the growth chart...she had actually had a jump on the chart at the last visit. He said that I shouldn't be so concerned with the amount of weight she is gaining over short periods of time anymore...like we were when she was much younger. As long as she is showing growth on the chart, he's happy. If he's happy, I'm happy.
I am beginning to think more and more that Lydia's pain while eating is due to gas. Teresa and I talked a lot about this at our visit on Wed. I have been keeping notes about her feedings...she always seems to cry more when she is having trouble burping. The more she burps during a feeding, the less she cries....though she still usually cries some. I'm trying to use Mylicon more with her to try to relieve some of the gas. She really needs to burp every ounce to be at least a little comfortable. I'm not really sure about the effect of the Mylicon yet...I'm going to keep trying it....though Dr Alberty didn't hold much stock in it. I talked to Dr Wood about the possibility of seeing Dr Khoshoo in New Orleans for more ideas...he's another GI doctor. Dr Wood spoke so highly of him...moreso than I've heard him talk about any other doctor....he said that he is very smart and has a very caring touch. He sounds a lot like Dr Wood. Dr Wood said that Dr Khoshoo would probably even call us at home...like he does often. We have been so blessed to be in Dr Wood's care...I would trust anyone that he so highly recommends.
Opthamologist visit yesterday:
Dr Williams saw some improvement with Lydia...she said she noticed right away that she was more visually attentive than the last time we saw her. We discussed her preference of looking to the right as opposed to the left...she thought it was more of a torticollis issue than a preferred field of vision issue. She saw that even when her head was turned to the right, she would still sometimes shift her eyes to the left to follow an object. She also thought that there was no reason to think that her field of vision would be better on one side versus the other...no sign of stroke or anything else that would impair it. She thought that any delay that she has in her vision will ultimately be a neurological issue...not a vision problem. I told her about some of the possibilities that Dr Superneau had suggested, and she said to let her know if there was any further testing of any syndromes that had eye-related problems associated with it...she would check for anything that Dr Superneau wanted to her to specifically look for. She wants to see her again in three months...she'll dilute her eyes again (like the first visit) to check for any changes. Until then...she will be on maternity leave...it was her last day before taking off. We wish her luck.
Wednesday, January 23, 2008
Weight problems...again?
Well...I felt much better after my cry yesterday. Lydia sure is a lot tougher than I am. She was not bothered by it all nearly as much as I was.
We've had a busy morning. Elise started her speech therapy at LSU for this semester this morning. The nurse called to say that she was waiting on us while we were buckling in the truck at LSU to come home. Teresa (OT) arrived as the nurse was still here. It's been hectic! And needless to say, Lydia was too pooped to do much for her therapy this morning! Teresa fed her and did a little oral motor stuff with her, but she sacked out as soon as she finished the bottle. She did a little less crying with this bottle...that seems to come and go, though it comes a lot more than it goes.
A new worry, or shall I say re-visited worry: Weight gain is not what it should be. Her weight today was 12 lbs. 4 oz. It is hard to say with absolute certainty that she is losing weight because each nurse has her own scale, so we are comparing different scales and it's hard to compare day to day. The nurse suggested that we look at what happens over a week's time: not good news...one week ago today, she was 12 lbs. 5 oz. Then, she went up to 12 lbs. 6oz. then 12 lbs. 7 oz. then back down to 12 lbs. 6 oz. now 12lbs. 4 oz. She should at least be gaining some weight, and the scales can't be off that much. I am extremely puzzled by this...although she hasn't been happy while she eats lately, I have been making sure that she gets it down. She has been taking about 24-26 oz each day, and if she only gets about 22 oz in a day, she usually wakes up at night to eat. So, she is eating enough and the time span for each feeding is reasonable...20-30 minutes. I have no explanation for the lack of weight gain. I am going to call Dr Wood today to find out how his measurements compare with these. He was not concerned at all yesterday because her weight was in the 10th percentile which is really good for Lydia. Confused and frustrated!
I plan to call Dr Alberty at the end of the week to let him know that there are no significant changes with her feeding. Hopefully, he'll have some more advice. (or even better...I hope her feedings improve on her own by Friday...please continue to pray for comfortable feedings.)
We've had a busy morning. Elise started her speech therapy at LSU for this semester this morning. The nurse called to say that she was waiting on us while we were buckling in the truck at LSU to come home. Teresa (OT) arrived as the nurse was still here. It's been hectic! And needless to say, Lydia was too pooped to do much for her therapy this morning! Teresa fed her and did a little oral motor stuff with her, but she sacked out as soon as she finished the bottle. She did a little less crying with this bottle...that seems to come and go, though it comes a lot more than it goes.
A new worry, or shall I say re-visited worry: Weight gain is not what it should be. Her weight today was 12 lbs. 4 oz. It is hard to say with absolute certainty that she is losing weight because each nurse has her own scale, so we are comparing different scales and it's hard to compare day to day. The nurse suggested that we look at what happens over a week's time: not good news...one week ago today, she was 12 lbs. 5 oz. Then, she went up to 12 lbs. 6oz. then 12 lbs. 7 oz. then back down to 12 lbs. 6 oz. now 12lbs. 4 oz. She should at least be gaining some weight, and the scales can't be off that much. I am extremely puzzled by this...although she hasn't been happy while she eats lately, I have been making sure that she gets it down. She has been taking about 24-26 oz each day, and if she only gets about 22 oz in a day, she usually wakes up at night to eat. So, she is eating enough and the time span for each feeding is reasonable...20-30 minutes. I have no explanation for the lack of weight gain. I am going to call Dr Wood today to find out how his measurements compare with these. He was not concerned at all yesterday because her weight was in the 10th percentile which is really good for Lydia. Confused and frustrated!
I plan to call Dr Alberty at the end of the week to let him know that there are no significant changes with her feeding. Hopefully, he'll have some more advice. (or even better...I hope her feedings improve on her own by Friday...please continue to pray for comfortable feedings.)
Tuesday, January 22, 2008
My poor baby
We just got back from a dr's trip this morning. I brougth Lydia to see Dr. Wood because she started to develop a little rosey cheek rash that I was afraid might be fifth disease. Thank God it was not. He said it is probably just chapped cheeks, and we should just treat it with Lubriderm. We then went for her blood test at the Lake to check her thyroid levels. She's had her thyroid medicine & reflux medicine, just like every day. She will soon get her shot (just like every day) and we have a PT appt with Susan this afternoon. I just cried the whole way home and am having trouble stopping the tears now. There is just so much for my poor little baby to endure...how dare I feel sorry for myself for all my "things to do" or my lack of sleep lately since she hasn't been sleeping well. The things that I am dealing with are nothing compared to what she has to take...and she's just a baby. I watched her cry through the blood test (oh...and she also had one yesterday with the home health nurse) and I could just see her saying, "Enough already!" She is just a little baby...not even five months old and has had so much to deal with! She has a 5-page medical history already. But, I know that God wouldn't give her any more than she can handle either. He must have a ton of confidence in her! That sort of helps me to accept it better...and I've seen how tough she can be.
I realized today that I haven't updated her weight lately...12 lbs. 6 oz. She gets weighed everytime the home health nurses come, so I forget to post it. I pray that it continues to go up...she has still been crying most times that she eats. She has also been refusing to eat sometimes. She'll take about an ounce and then throw her head to the side when I try to give her more. Usually after waiting a couple of minutes, I can get her to take some more. Once I get the bottle into her mouth, she'll usually start to suck...but not always. She also gags a lot while trying to eat. Please continue to pray for comfortable feedings for her so that she can maintain her weight gain and feel some relief from whatever pain is causing her to hate to eat.
I realized today that I haven't updated her weight lately...12 lbs. 6 oz. She gets weighed everytime the home health nurses come, so I forget to post it. I pray that it continues to go up...she has still been crying most times that she eats. She has also been refusing to eat sometimes. She'll take about an ounce and then throw her head to the side when I try to give her more. Usually after waiting a couple of minutes, I can get her to take some more. Once I get the bottle into her mouth, she'll usually start to suck...but not always. She also gags a lot while trying to eat. Please continue to pray for comfortable feedings for her so that she can maintain her weight gain and feel some relief from whatever pain is causing her to hate to eat.
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