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.
Sunday, January 20, 2008
Our Weekend
Two words: sleep deprived! We had to skip the infant massage class on Saturday morning because Lydia and I were up until 3 am the night before! :( I just couldn't get up that morning, especially since it was cold and rainy...and Lydia slept until 9:00. Hopefully, we can catch up on what we missed next week. Then, last night...I was awakened...oh..I don't know...around 8-10 times... I lost track. I felt like I never really went to sleep. Lydia woke up at 1:30 wanting to eat (which she hasn't done in a long time!)...then she woke up every hour after that wanting her pacifier...I hope that is not the start of something new! Then, Audrey woke up a couple of times...wanting some medicine for the start of a cold...then a bathroom accident. And Elise woke me up once with a book in my face...probably around 4 am...she climbed in the bed and went back to sleep with us. What a night! I think that God is trying to teach me to be happy with the 5-6 hours of straight sleep that I've been getting lately. I hear it loud and clear! :)
Well...this morning Lydia ate with NO CRYING for the first time in quite a few days. Please help us pray specifically that this will continue. It breaks my heart every time she suffers through a bottle. I have high hopes for the switch in medicine...to twice-a-day Prevacid...I want so much for that to do the trick.
Grandma and Paw-Paw came yesterday to stay with Lydia while we took the big girls and Papa and Ms Tonita to Tulane to watch one of Martin's old players in a game...he plays for Rice. It was a great time! I think we all had a ball! Audrey's highlight of the trip was Mary Poppins in the car on the way home...I think that's the only reason she wanted to come...although she did enjoy watching the cheerleaders, the band, and running around on the court after the game. Elise enjoyed her coloring books. The rest of us DID watch the game. :) Rice lost, but Lawrence played a really good game.
More Elise excitement:
She is becoming more and more vocal every day...putting words together more. Her whole demeanor has changed a little because she is able to communicate more. It is so much fun to watch and listen to her. She is starting to know many of her colors....blue (do) is her favorite, but she also knows red (ded), brown (nown), yellow (ow), and orange (on). My biggest news: Audrey and Elise were each writing on their Magna-doodle boards in the living room when I walked in yesterday. Audrey was writing her numbers and saying them as she wrote..."5,6,7"... Elise was watching her very intently, then she started writing and saying "8, 9." It sounded more like, "Date, Nigh," but I knew what she was saying. I was sooo impressed! Grandma says that Elise has so much in her brain that she just hasn't been able to get out. We have no idea how much she really knows! It is fun finding out!
Audrey has been practicing for quite some time and has perfected in the last few weeks...tying her shoes. She is so proud of herself, and we are just as proud...one more thing that she can do "all by myself."
Audrey and Elise have both been entertaining us lately with dress-up fun. Friday night, they both tried on all of momma's swimsuits...today, they are in their Cinderella dresses with big bold clip on earrings from Aunt Jane. What fun!
Daddy was here today for the first time to see me give Lydia's shot. He was really proud of me...called me "Dr. Momma." That encouragement helps.
This week's appt's:
Home Health - MWF 11:00
Blood test (to check TSH- thyroid) Tues.
PT with Susan- Tues. 12:15
Elise- Speech- LSU- Wed 9:00
OT with Teresa- Wed 11:00
Dr. Williams (Opthamologist)- Thurs 10:00
Elise- Speech- Suzanne Fri 9:00
Please, please pray for comfortable feedings for Lydia! :)
Well...this morning Lydia ate with NO CRYING for the first time in quite a few days. Please help us pray specifically that this will continue. It breaks my heart every time she suffers through a bottle. I have high hopes for the switch in medicine...to twice-a-day Prevacid...I want so much for that to do the trick.
Grandma and Paw-Paw came yesterday to stay with Lydia while we took the big girls and Papa and Ms Tonita to Tulane to watch one of Martin's old players in a game...he plays for Rice. It was a great time! I think we all had a ball! Audrey's highlight of the trip was Mary Poppins in the car on the way home...I think that's the only reason she wanted to come...although she did enjoy watching the cheerleaders, the band, and running around on the court after the game. Elise enjoyed her coloring books. The rest of us DID watch the game. :) Rice lost, but Lawrence played a really good game.
More Elise excitement:
She is becoming more and more vocal every day...putting words together more. Her whole demeanor has changed a little because she is able to communicate more. It is so much fun to watch and listen to her. She is starting to know many of her colors....blue (do) is her favorite, but she also knows red (ded), brown (nown), yellow (ow), and orange (on). My biggest news: Audrey and Elise were each writing on their Magna-doodle boards in the living room when I walked in yesterday. Audrey was writing her numbers and saying them as she wrote..."5,6,7"... Elise was watching her very intently, then she started writing and saying "8, 9." It sounded more like, "Date, Nigh," but I knew what she was saying. I was sooo impressed! Grandma says that Elise has so much in her brain that she just hasn't been able to get out. We have no idea how much she really knows! It is fun finding out!
Audrey has been practicing for quite some time and has perfected in the last few weeks...tying her shoes. She is so proud of herself, and we are just as proud...one more thing that she can do "all by myself."
Audrey and Elise have both been entertaining us lately with dress-up fun. Friday night, they both tried on all of momma's swimsuits...today, they are in their Cinderella dresses with big bold clip on earrings from Aunt Jane. What fun!
Daddy was here today for the first time to see me give Lydia's shot. He was really proud of me...called me "Dr. Momma." That encouragement helps.
This week's appt's:
Home Health - MWF 11:00
Blood test (to check TSH- thyroid) Tues.
PT with Susan- Tues. 12:15
Elise- Speech- LSU- Wed 9:00
OT with Teresa- Wed 11:00
Dr. Williams (Opthamologist)- Thurs 10:00
Elise- Speech- Suzanne Fri 9:00
Please, please pray for comfortable feedings for Lydia! :)
Thursday, January 17, 2008
My Hero
Lydia Cassels Poché is now officially my new hero! We just got finished with her shot...I gave it all by myself...and she did not even let out a full-fledged cry...just a little whimper...then, as soon as I started talking to her, she smiled and cooed at me. It's like she was saying, "We're in this together." I think she knows that it's hard for me to do the shot, and she's trying to be strong for me. I didn't hesitate quite as many times as I did yesterday, but it did take a little time for me to actually get it there. What a trooper she is!! I can't even imagine some adults being as tough and brave as she has been through all of her ordeals.
We had our PT appt with Susan today. Our homework is to work on thoracic extension, which I think has been one of Teresa's main goals for her. Susan showed me several different positions that this can be done. (It really helps me to write this all out soon after the visit, so that I can remember better.)
-hold her high up on my shoulder (switch shoulders often) and press against her back
-lie her on her stomach over my thighs...with her head hanging off the end of my leg
-sit with my knees up...sit her up in my legs with her head hanging off the end of my knees
-burp her leaning a little forward; pat her high back
Other things:
-Have her sit in the boppy pillow with a smaller boppy pillow in front of her to rest her hands and push with her hands
-During dressing time, lie her on her back...rotate trunk in each direction.
-During massages, turn her feet and hips in..(they turn out automatically at all times)
-When using the ball, don't rock it...she is not ready for that...put her on her tummy at a 45 degree angle...hold her chin and hold her hands down on the ball to allow her to push herself up. She normally pushes with her hands and then pulls them back...if we hold them in place, she will start to bear weight on them.
-hold her in standing position...alternate weight on each foot. (This is to help stretch her ankles like Dr Hollman asked.)
We talked about massage class last week, and Susan said that Lydia wins the prize for the baby who enjoyed it most. I told her that she's been like that every time we've done it. My cup overfloweth for her! :)
We had our PT appt with Susan today. Our homework is to work on thoracic extension, which I think has been one of Teresa's main goals for her. Susan showed me several different positions that this can be done. (It really helps me to write this all out soon after the visit, so that I can remember better.)
-hold her high up on my shoulder (switch shoulders often) and press against her back
-lie her on her stomach over my thighs...with her head hanging off the end of my leg
-sit with my knees up...sit her up in my legs with her head hanging off the end of my knees
-burp her leaning a little forward; pat her high back
Other things:
-Have her sit in the boppy pillow with a smaller boppy pillow in front of her to rest her hands and push with her hands
-During dressing time, lie her on her back...rotate trunk in each direction.
-During massages, turn her feet and hips in..(they turn out automatically at all times)
-When using the ball, don't rock it...she is not ready for that...put her on her tummy at a 45 degree angle...hold her chin and hold her hands down on the ball to allow her to push herself up. She normally pushes with her hands and then pulls them back...if we hold them in place, she will start to bear weight on them.
-hold her in standing position...alternate weight on each foot. (This is to help stretch her ankles like Dr Hollman asked.)
We talked about massage class last week, and Susan said that Lydia wins the prize for the baby who enjoyed it most. I told her that she's been like that every time we've done it. My cup overfloweth for her! :)
Wednesday, January 16, 2008
I did it...
Ok... I actually gave Lydia her shot today for the first time, and it wasn't as hard as I thought it would be. It was not nearly as bad as cleaning Audrey's burn wound a while back like I had compared it to. Lydia barely cried at all...I think she was being easy on her momma...what a sweetheart! It's funny how you have to have experience doing something to get used to it....when I got ready to give the shot, the nurse said, "Hold on...It's not a dart." We both started laughing, and I said, "I think this is what I did in the orange...show me what I'm supposed to do." Then, it took me a while before I could get it from my hand and into her leg....I started to and hesitated a couple of times, just nervous I guess. Afterwards, the nurse was very enthusiastic about telling me what a great job I did...I think she could tell I needed the reassurance. It really wasn't bad at all, and I think I'll be able to do it again.
Tuesday, January 15, 2008
Small accomplishments
How fun it is to celebrate small accomplishments! I have been so proud of my baby girl the past couple of days. She has been holding on to her pacifier better and better...she's even learning to push it back into her mouth with her hand when it starts to fall. I've been putting her in the Bumbo seat for the past couple of days....what a big girl she is! She loves it! She is able to hold her head up for 5-10 minutes before it starts to lag back. While holding her on her back or while lying on her back on the boppy pillow, she is starting to try to pull her head up a little. The last couple of days she is starting to stay awake a little longer. I think she is trying to stay awake between her 10:00 feeding and 1:00 feeding. All of these things are good news!!
She is loving her massages!! Susan says that before the massage you should ask your baby if they are ready for a massage...she is always ready...too bad we can't record voices on this blog...I wish I could record her excited squeal! So much fun! Then, she smiles and coos the whole time! It is such a great bonding experience for us.
We started the Prevacid tonight...hoped to start it this morning, but there was a mix-up at the pharmacy...they gave us the capsules instead of the solutabs, so I wasn't able to pick up the corrected prescription until this evening.
Please think of me tomorrow...I am going to try to give Lydia her shot for the first time. I have been drawing it up into the needle for about a week now, but so far the nurses have actually given the shot when they were here. My grandfather's wife, Ms Pat and Nannie J's mom, Celine, have helped to give it to her when the nurse didn't come. I've just decided that if Lydia is tough enough to receive the shot...I need to be just as tough as she is. Ms Pat suggested that I practice on an orange...the nurse left a message today saying, "I hope you've been practicing on your orange," so I guess I'd better get ready. I'll try it tonight and in the morning to be ready when she comes. I think I can do it.
A couple of things I forgot to mention from yesterday's GI visit:
-Though most babies outgrow reflux at around 4-6 months, Dr Alberty predicts that Lydia may struggle with this indefinitely...well into adulthood. He also said that, with her medical history, he wouldn't be surprised if she develops even more GI problems....not good news.
-He wants us to monitor how she does on the twice-a-day Prevacid...if she seems to do well for about two weeks, she can start eating baby food...fun! Though, I predict that texture will be an issue for her...her gag reflux is very strong. I hope she surprises me.
I was reading a journal on the Caring Bridge site tonight of a little boy that goes to Elise's Mother's Day Out. He is seventeen months old and was in a car accident on Christmas Day. He has been in the PICU since then. We've all been saying that God doesn't give us any more than what we can handle. I was deeply moved and amazed at the words that his mother wrote...so faith-filled and positive...and even a sense of humor...amazing! I know that our family is going through a lot, but I could not imagine what that must be like....a child who is perfectly healthy one minute, then fighting for his life the next. I think God hand-picked her and her husband to be an inspiration to others through this crisis.
Elise's celebration:
Elise's teacher told me today that she is starting to interact more with the other kids. Up until this point, she has always been an observer...standing back watching everyone else. Now she is actually starting to try to play with them. That is great news!! I think it means that she feels more confident...her new language skills are no doubt playing a part in that. Her teacher says that she is able to communicate with her more and more...though sometimes she has trouble deciphering her words (so do I!).
Audrey's celebration:
She had her second dentist appointment today, and she did absolutely fantastic again!! She was a little stand-offish at first...she kept saying, "I want Lisee to go first." (As it turns out, Lisee didn't go at all...chickened out :) But, the dental hygenist was wonderful...she was from Brusly actually...Brandi Andreas. She asked Audrey to come sit in the chair and she'd show her all her "toys," which were actually her tools. Audrey was very intrigued, so she did. Then, Brandi told her she was going to give her pretty princess teeth...enough said...Audrey was hooked! She sat so still and let her do everything...she even had x-rays done...she is still talking about her pretty princess teeth!
She is loving her massages!! Susan says that before the massage you should ask your baby if they are ready for a massage...she is always ready...too bad we can't record voices on this blog...I wish I could record her excited squeal! So much fun! Then, she smiles and coos the whole time! It is such a great bonding experience for us.
We started the Prevacid tonight...hoped to start it this morning, but there was a mix-up at the pharmacy...they gave us the capsules instead of the solutabs, so I wasn't able to pick up the corrected prescription until this evening.
Please think of me tomorrow...I am going to try to give Lydia her shot for the first time. I have been drawing it up into the needle for about a week now, but so far the nurses have actually given the shot when they were here. My grandfather's wife, Ms Pat and Nannie J's mom, Celine, have helped to give it to her when the nurse didn't come. I've just decided that if Lydia is tough enough to receive the shot...I need to be just as tough as she is. Ms Pat suggested that I practice on an orange...the nurse left a message today saying, "I hope you've been practicing on your orange," so I guess I'd better get ready. I'll try it tonight and in the morning to be ready when she comes. I think I can do it.
A couple of things I forgot to mention from yesterday's GI visit:
-Though most babies outgrow reflux at around 4-6 months, Dr Alberty predicts that Lydia may struggle with this indefinitely...well into adulthood. He also said that, with her medical history, he wouldn't be surprised if she develops even more GI problems....not good news.
-He wants us to monitor how she does on the twice-a-day Prevacid...if she seems to do well for about two weeks, she can start eating baby food...fun! Though, I predict that texture will be an issue for her...her gag reflux is very strong. I hope she surprises me.
I was reading a journal on the Caring Bridge site tonight of a little boy that goes to Elise's Mother's Day Out. He is seventeen months old and was in a car accident on Christmas Day. He has been in the PICU since then. We've all been saying that God doesn't give us any more than what we can handle. I was deeply moved and amazed at the words that his mother wrote...so faith-filled and positive...and even a sense of humor...amazing! I know that our family is going through a lot, but I could not imagine what that must be like....a child who is perfectly healthy one minute, then fighting for his life the next. I think God hand-picked her and her husband to be an inspiration to others through this crisis.
Elise's celebration:
Elise's teacher told me today that she is starting to interact more with the other kids. Up until this point, she has always been an observer...standing back watching everyone else. Now she is actually starting to try to play with them. That is great news!! I think it means that she feels more confident...her new language skills are no doubt playing a part in that. Her teacher says that she is able to communicate with her more and more...though sometimes she has trouble deciphering her words (so do I!).
Audrey's celebration:
She had her second dentist appointment today, and she did absolutely fantastic again!! She was a little stand-offish at first...she kept saying, "I want Lisee to go first." (As it turns out, Lisee didn't go at all...chickened out :) But, the dental hygenist was wonderful...she was from Brusly actually...Brandi Andreas. She asked Audrey to come sit in the chair and she'd show her all her "toys," which were actually her tools. Audrey was very intrigued, so she did. Then, Brandi told her she was going to give her pretty princess teeth...enough said...Audrey was hooked! She sat so still and let her do everything...she even had x-rays done...she is still talking about her pretty princess teeth!
Monday, January 14, 2008
GI appt today
We saw Dr. Alberty for the first time today...love him! He listened to all that has been done with Lydia already and seemed to agree that she was puzzling. He said that he has seen in a lot of babies with reflux that one dose of medicine (acid suppressant) per day is not enough. Even if they keep the same daily dose, split in two usually works better for them. We both agreed that her crying while she eats may be reflux that is uncomfortable and just not as painful as it was when she would scream while eating. This attempt at meds twice a day will hopefully soothe that. We are going back to Prevacid because it would be difficult to divide the Nexium powder into two seperate doses, and I told him that I am not convinced that the Nexium worked better than the Prevacid. They both seemed to work for a short period, and then the reflux started worsen again...same cycle with both medicines. He said we should keep adding the same oatmeal to the same formula, since I feel it is helping (at least somewhat). I was really impressed by him because he seemed really knowledgeable about current research in the topics. He told me that positioning has been proven not to have an effect. In fact...studies were done comparing babies put in infant seats (which is what several dr's, nurses have told us to do) compared to babies lying flat and the reflux was worse with babies in the infant seats. It makes sense to me because I find that if we leave home shortly after Lydia has eaten, she cries much more in the car....she's in the car seat. The idea behind the car seat solution was that the baby is more upright so gravity helps the food to stay down. What they found, though, was that the babies' mid-sections were scrunched up in the seat, which causes pressure that causes the acid to go back up into the esophagus. He cited several studies during our conversation, which builds my confidence in him...I like a doctor that knows his stuff. He wants to see her again in two months.
Lydia stayed awake longer than ever today...from 10:00 til about 3:00....that's a big jump from staying awake only an hour at a time. She was tired and crying a lot between 1 and 3 because she was so tired though...we were in route to the dr's office and meeting with the dr during that time. Still...she was awake and happy for a much longer time today. I was proud of her!
I continue to be thankful for all the help we get...Maw-Maw Grace, Aunt Linda, Melissa, and Shelley today....Paw-Paw and Aunt Leigh tomorrow...Granny yesterday...Grandma over the weekend. We are getting so much love!
Lydia stayed awake longer than ever today...from 10:00 til about 3:00....that's a big jump from staying awake only an hour at a time. She was tired and crying a lot between 1 and 3 because she was so tired though...we were in route to the dr's office and meeting with the dr during that time. Still...she was awake and happy for a much longer time today. I was proud of her!
I continue to be thankful for all the help we get...Maw-Maw Grace, Aunt Linda, Melissa, and Shelley today....Paw-Paw and Aunt Leigh tomorrow...Granny yesterday...Grandma over the weekend. We are getting so much love!
Sunday, January 13, 2008
A Faithful Heart
It is really late right now, and I should be getting to bed...but, my heart is so full of peace and happiness right now that I just had to share. I have been touched by so many emails, conversations, and speeches that I've heard today. I am in wonder at our marvelous God! My eyes were opened by an email that my friend Stephanie sent me today. She talked about the quote..."God never gives you more than you can handle." I've always found strength in it, but she gave me a little more insight into it. She talked about her daughter, Emily, and her struggles...God only allowed them to learn a little at a time about her issues...at only the perfect time for them to accept it. I feel the same way about Lydia. I remember when I was pregnant for Audrey...I prayed for a healthy baby and had these feelings: Of all the things that could possibly be or go wrong with a baby, I could hardly imagine that we would have a child with no problems...then she came along and was possibly the easiest baby ever created. Then, when I was pregnant for Elise, I thought mostly about whether it was a boy or a girl (stupid, huh?). I just assumed that she would be free of problems too. When we learned of her delays, we met them head-on and treated them...knowing that she would grow to one day develop age-appropriately. When I was pregnant with Lydia, I remember thinking that it would be so nice to have a baby again that I wouldn't have to worry about how fast or well she was developing....thinking that God wouldn't possibly give me two children with delays. I prayed mostly about her delivery, again assuming that she would just be healthy. I think that if the doctors had told me when she was born that she would undergo just what we know now...it would have been extremely daunting. Even when we discovered her reflux, when she was admitted to the hospital, I was thinking, "Good. Let's take care of this and get on with our lives." I was expecting that we would find a solution and bring home a happy baby. Case closed. If I had found out half of what I know now at that point...again, I don't think I would have been able to handle it. Hearing each bit of information separately, at God's own timing, has helped to make it easier for me. Thank you Stephanie for that eye-opening reflection.
I am also in awe that God knows what He's doing....as we all already knew...but, it is wonderful to think about. In talking with Lydia's Nannie J some time back, I was talking about how I wondered why God made Lydia my third child. I thought that I could have cared for her much easier if I didn't have two other little ones that also needed me. Then, it occurred to me...after Audrey was born, Martin and I felt that I needed to go back to work. I could never have worked full-time with the schedule that Lydia keeps...she's busier than a lot of adults I know. :) Then, I realized that He gave me Elise before Lydia to prepare me for the world of therapy and inconsistencies. I have gained so much knowledge from Elise's treatment that has helped me to deal with and be prepared for treatment of Lydia...not that their conditions are the same, but the things we have experienced with Elise have prepared me mentally, emotionally, and physically for the things that have happened and the things that are yet to come with Lydia. Not to mention the fact that God instilled in me (from childhood) the desire to be a stay-at-home mom. How awful it would be if I resented the fact that I couldn't work outside of the home? And how thankful I am about the opportunities that have been given to me by Tammy and WBR parish in the field of educational technology...and the fact that I walked into Jan Hinson's office at LSU one day unsure of what field I wanted to pursue for my master's degree and she said, "Maybe you'd like educational technology." That has brought me so many opportunities for work at home.
Another touching quote today: I was flipping through channels tonight while feeding Lydia and I ran into a lady speaking on the Catholic tv station. She was talking about being "blessed by stress." I so relate to that! My life lately seems to feel like one big stresser and one big blessing at the same time. I see all of the good that has already come from this. So many hearts joined together in prayer! So many people offering their help and support! Again, God knows what He's doing.
I want to pray for Ms Hilda and all other family members and friends who are struggling with accepting whatever life brings for Lydia. I have seen sadness in so many of my loved ones, and I want that to be replaced by peace and happiness. May we all feel at peace knowing that God will reveal his masterful plan that is so much greater than anything we could plan for Lydia or ourselves. Though I feel stressed and overwhelmed about how busy our lives are right now, I feel joy in my heart that Lydia is who she is...and will become all that God wants her to be. I know that she will touch lives and make a mark in this world...Ms Hilda pointed out that she already has. I feel that is true. Some people have said that they are praying for a miracle for her. I have no doubt that God will answer these prayers...he already has. She is already such a beautiful miracle and a blessing to us.
Just a few days ago, you read my post about my breakdown...my first tear about this situation. A few hours later, my aunt Leigh came over and spent the rest of the day...she helped to straighten up my house and wash a ton of clothes. After clearing some of that clutter, I felt much better. I wrote to my friend Marcie today...yes, we are going through a lot right now, but God is giving us the people, the tools, and the strength to get through it. I feel such a peace knowing that He will NEVER let us go through it alone. We are not raising Lydia all by ourselves...He is and will be with us every step of the way, and I pray that He continues to send all of the angels that have helped us so far. I am so grateful for every doctor, every nurse, every therapist, every friend, every family member, every encouraging word, every innocent child, every ANGEL that helps me to stay positive and full of joy in a time that could potentially be heart-wrenching. I want all of you to know how much your encouraging words help me...I need to continue to hear them...Sometimes I doubt that I am doing the best job that I can. Your confidence and support are very helpful. Thank you!
I think about Brian Hess's wife, Kimen...my heart goes out to her so much. Her husband was in a car accident over a year ago and is still recovering. Their lives have changed forever. We know that God gives us only what we can handle. I don't know if I could handle that. Yes, Lydia will have some issues and we will need to be strong for her...but, I have my husband (my best friend) to go through it with me. I can talk to him about any doubts or fears that I have, and I can find strength in our relationship. That is so helpful in my situation. I continue my prayers for her, as I do for everyone who needs them. Sometimes, like today, I find myself not sure of what to pray. And I am reminded of a story I once heard...a little boy was heard saying his ABC's over and over again while on his knees. When someone asked what he was doing, he said that he was praying, but he didn't know what to say...so he decided to give God the letters so that He could make the words. - God always knows. He just needs us to remain close and put our trust in Him.
I am also in awe that God knows what He's doing....as we all already knew...but, it is wonderful to think about. In talking with Lydia's Nannie J some time back, I was talking about how I wondered why God made Lydia my third child. I thought that I could have cared for her much easier if I didn't have two other little ones that also needed me. Then, it occurred to me...after Audrey was born, Martin and I felt that I needed to go back to work. I could never have worked full-time with the schedule that Lydia keeps...she's busier than a lot of adults I know. :) Then, I realized that He gave me Elise before Lydia to prepare me for the world of therapy and inconsistencies. I have gained so much knowledge from Elise's treatment that has helped me to deal with and be prepared for treatment of Lydia...not that their conditions are the same, but the things we have experienced with Elise have prepared me mentally, emotionally, and physically for the things that have happened and the things that are yet to come with Lydia. Not to mention the fact that God instilled in me (from childhood) the desire to be a stay-at-home mom. How awful it would be if I resented the fact that I couldn't work outside of the home? And how thankful I am about the opportunities that have been given to me by Tammy and WBR parish in the field of educational technology...and the fact that I walked into Jan Hinson's office at LSU one day unsure of what field I wanted to pursue for my master's degree and she said, "Maybe you'd like educational technology." That has brought me so many opportunities for work at home.
Another touching quote today: I was flipping through channels tonight while feeding Lydia and I ran into a lady speaking on the Catholic tv station. She was talking about being "blessed by stress." I so relate to that! My life lately seems to feel like one big stresser and one big blessing at the same time. I see all of the good that has already come from this. So many hearts joined together in prayer! So many people offering their help and support! Again, God knows what He's doing.
I want to pray for Ms Hilda and all other family members and friends who are struggling with accepting whatever life brings for Lydia. I have seen sadness in so many of my loved ones, and I want that to be replaced by peace and happiness. May we all feel at peace knowing that God will reveal his masterful plan that is so much greater than anything we could plan for Lydia or ourselves. Though I feel stressed and overwhelmed about how busy our lives are right now, I feel joy in my heart that Lydia is who she is...and will become all that God wants her to be. I know that she will touch lives and make a mark in this world...Ms Hilda pointed out that she already has. I feel that is true. Some people have said that they are praying for a miracle for her. I have no doubt that God will answer these prayers...he already has. She is already such a beautiful miracle and a blessing to us.
Just a few days ago, you read my post about my breakdown...my first tear about this situation. A few hours later, my aunt Leigh came over and spent the rest of the day...she helped to straighten up my house and wash a ton of clothes. After clearing some of that clutter, I felt much better. I wrote to my friend Marcie today...yes, we are going through a lot right now, but God is giving us the people, the tools, and the strength to get through it. I feel such a peace knowing that He will NEVER let us go through it alone. We are not raising Lydia all by ourselves...He is and will be with us every step of the way, and I pray that He continues to send all of the angels that have helped us so far. I am so grateful for every doctor, every nurse, every therapist, every friend, every family member, every encouraging word, every innocent child, every ANGEL that helps me to stay positive and full of joy in a time that could potentially be heart-wrenching. I want all of you to know how much your encouraging words help me...I need to continue to hear them...Sometimes I doubt that I am doing the best job that I can. Your confidence and support are very helpful. Thank you!
I think about Brian Hess's wife, Kimen...my heart goes out to her so much. Her husband was in a car accident over a year ago and is still recovering. Their lives have changed forever. We know that God gives us only what we can handle. I don't know if I could handle that. Yes, Lydia will have some issues and we will need to be strong for her...but, I have my husband (my best friend) to go through it with me. I can talk to him about any doubts or fears that I have, and I can find strength in our relationship. That is so helpful in my situation. I continue my prayers for her, as I do for everyone who needs them. Sometimes, like today, I find myself not sure of what to pray. And I am reminded of a story I once heard...a little boy was heard saying his ABC's over and over again while on his knees. When someone asked what he was doing, he said that he was praying, but he didn't know what to say...so he decided to give God the letters so that He could make the words. - God always knows. He just needs us to remain close and put our trust in Him.
Saturday, January 12, 2008
Infant Massage Class today
Lydia and I went for our infant massage class this morning. We came in late (no surprise) and Lydia was crying (no surprise). As soon as we started the massaging, she got so relaxed and excited...there were 5 babies there, and she let everyone know how much she liked it. She was cooing and smiling and cackling the whole time! We have to make this a part of our daily routine...she loves it!!! We used vegetable oil for massaging...Susan said that it must be something edible because babies might get it in their mouths. She was stripped naked, and we worked on legs and feet today. It is a five week class, and each time we will add a new body part. It was so much fun! A lot of people I talked to were confused about this..it is not therapy...it is massage, like all babies should do (with or without physical issues)....but, in Lydia's case the massage is probably like therapy for her because it may help to relax her nervous system some. We can't wait until next week.
Friday, January 11, 2008
The latest
I feel like I need to apologize...sorry to be so pitiful on my last post. Since then, I've received 2 meals, LOTS of loads of clothes done, 1 offer to do my shopping, 4 offers to babysit, 3 offers of whatever-I-need, and 2 offers to buy formula. Though I appreciate it all tremendously more than I can type, I feel guilty for making everyone feel like they have to help me. Each and every one of you has such a large plate full of responsibilities...I know that! I just needed to vent a little.
I also feel bad about making my husband feel bad about not being here much. I KNOW that he would love to be here as much as we would love him here. And he has his own work-related stress that he's dealing with too...basketball season is in full swing. Martin- I love you and I'm thankful for all that you do...and I respect your dedication and hard work in your job. Your players are very lucky...and we are too!
I am getting better at accepting the help, but I still feel guilty that it seems I was eliciting it myself. I know that everyone has busy lives, and God only puts on our plates what He thinks we can handle...I am thankful that He sent me so many angels to help with what's on my plate. One of my prayers is that I can one day repay all the generous help that has been provided and offered to me...whether it be to you all or to someone in my shoes. THANK YOU!
Lydia has been doing pretty well...eating plenty, but still crying at most feedings. We will see a new GI dr on Monday...I so pray that he will have more answers for us. Lydia doesn't seem to be in tremendous pain when she eats anymore, but it just doesn't seem comfortable to her...it is by-far not her favorite time of the day, as it is to most babies.
The new thyroid medication is much easier to give to her. She is barely bothered by it at all. Yeah!
We start a new baby massage class with Susan tomorrow morning. It will be every Saturday morning (not sure how long). From my understanding, Susan took a course on it and she is offering it to parents for free...we just have to write an evaluation on her after completing at least 4 classes. I am really excited about it. I think it will be great for Lydia...a great way to calm her nervous system...and some fun "Lydia and mommy time" No shots, no doctors, no interruptions...sounds nice. :)
Elise's first day back of speech therapy with Suzanne went great this morning! She was very impressed with Elise's progress...she said she has to learn her all over again. Suzanne stayed a little extra and took Elise for a walk (thank you) and she said that Elise was saying lots of things. Yeah Lisee-poo!
Aunt Leigh came over this afternoon to keep Elise and Lydia for me while I went to pick Audrey up from school. It was parent-teacher conference day and I had to go sign her IEP. On the way home, we stopped at Sonic for an ice cream...I thought she could use a good mommy and Audrey treat. She has still been pretty cranky and whiny at times, but we're working on it. Grandma came to get the two big girls to spend the night tonight so that Lydia and I could go to Martin's game and to massage class in the morning. That was a treat...for everyone I hope!
Wish I had better news about the Broncos...say some cheers for them...District play starts next week!
I also feel bad about making my husband feel bad about not being here much. I KNOW that he would love to be here as much as we would love him here. And he has his own work-related stress that he's dealing with too...basketball season is in full swing. Martin- I love you and I'm thankful for all that you do...and I respect your dedication and hard work in your job. Your players are very lucky...and we are too!
I am getting better at accepting the help, but I still feel guilty that it seems I was eliciting it myself. I know that everyone has busy lives, and God only puts on our plates what He thinks we can handle...I am thankful that He sent me so many angels to help with what's on my plate. One of my prayers is that I can one day repay all the generous help that has been provided and offered to me...whether it be to you all or to someone in my shoes. THANK YOU!
Lydia has been doing pretty well...eating plenty, but still crying at most feedings. We will see a new GI dr on Monday...I so pray that he will have more answers for us. Lydia doesn't seem to be in tremendous pain when she eats anymore, but it just doesn't seem comfortable to her...it is by-far not her favorite time of the day, as it is to most babies.
The new thyroid medication is much easier to give to her. She is barely bothered by it at all. Yeah!
We start a new baby massage class with Susan tomorrow morning. It will be every Saturday morning (not sure how long). From my understanding, Susan took a course on it and she is offering it to parents for free...we just have to write an evaluation on her after completing at least 4 classes. I am really excited about it. I think it will be great for Lydia...a great way to calm her nervous system...and some fun "Lydia and mommy time" No shots, no doctors, no interruptions...sounds nice. :)
Elise's first day back of speech therapy with Suzanne went great this morning! She was very impressed with Elise's progress...she said she has to learn her all over again. Suzanne stayed a little extra and took Elise for a walk (thank you) and she said that Elise was saying lots of things. Yeah Lisee-poo!
Aunt Leigh came over this afternoon to keep Elise and Lydia for me while I went to pick Audrey up from school. It was parent-teacher conference day and I had to go sign her IEP. On the way home, we stopped at Sonic for an ice cream...I thought she could use a good mommy and Audrey treat. She has still been pretty cranky and whiny at times, but we're working on it. Grandma came to get the two big girls to spend the night tonight so that Lydia and I could go to Martin's game and to massage class in the morning. That was a treat...for everyone I hope!
Wish I had better news about the Broncos...say some cheers for them...District play starts next week!
Thursday, January 10, 2008
Neurologist Today
Ok...so I just had my first minor breakdown on the phone with Tiffanie...T-thanks for listening and thanks for the pep talk! I'm not really sure what brought me to it...just overwhelmed...dr's appointments, prescriptions, therapy, home health, Elise and Lydia's therapy homework that I am supposed to do at home while also providing quality time with Audrey, clothes, dishes, toys, bills, clothes, and did I mention clothes?? Trying to keep in all in my brain is hard enough....not to mention carrying it out. I have several lists and my trusty calendar that I try to keep up with to keep me in line...it's a challenge. And doing most of this with a husband who's a coach...which translates to 'without a husband'...he is such a big help when he's here...the problem is that he's rarely here. I am so thankful for all of the help that I do get! Grandparents, aunts, and friends have offered so much time and I am so grateful for that!! It is just so hard to receive help...silly, I know. Aunt Becky and Aunt Leigh have offered to help with Audrey and Elise's taxi-ing to and from school...which is an enormous help! Now I'm worried about the girls, especially Elise, adjusting to that new routine. She has been so attached to momma lately. I know that I have to take the help and let it go...prayer in place of worry.
I think another thing that has gotten me a little shaken up is that Dr Hollman wants to keep Lydia on the ACTH shots now for the duration...I had really had my hopes up that she would stop it, but after talking to her, I feel like it is the right thing to do. It is just so overwhelming too. Dr. Hollman was pleased with Lydia's cooing and smiling that she saw today...she was also doing some cackling, as Dr Hollman called it. She feels like (and I do too) that the medicine must have something to do with it, especially since she hasn't had any more spasms since she started taking it. She said that it sometimes takes babies up to 2 weeks on the med to rid the spasms. She is also still puzzled by the fact that the EEG was normal again, but it does not mean that she is not having infantile spasms...there have been other babies with spasms and a normal EEG..just not many. I also brought a video tape of a portion of one of them, and she said that it was positively an infantile spasm. We will continue the shots once a day until Feb 1. We will then begin to wean her by giving it every other day and decreasing the dose every few times. She will complete the process on Feb 28 (I think....I have it written down.) We talked about the fact that her face will get really big (swollen). I looked at some pictures online of another baby that took it last night...that makes me sad too. It just looks so uncomfortable. Martin says he is not concerned with that at all...she needs it, and he's ok with it. I know she needs it too, and I know she'll be fine even when her face gets so big, but I hope it doesn't make me cry out of sympathy every time I look at her.
Dr Hollman thought that Lydia's head control was better too...still concerned that she is not picking her head up yet while on her belly. She wants us to keep working on that. She is also still concerned about the up-going big toes. She said it means that messages from the brain are not reaching the spinal cord properly (that's my layman's terms)...there was a name for it, but I can't remember that right now. A new concern: she found that her ankles are starting to stiffen. There was resistance when she tried to move them, and she didn't notice that at our last visit. She said that that could possibly be a sign of cerebral palsy later down the road. She still had no diagnosis for us, which she says is a good thing. Dr Hollman says that she likes to tell her parents it is better not to know, because if you know a name for it---it is always bad. She said that there are no diagnoses in neurology that are ok. She was encouraged by the cooing and smiling. She says that shows improvement, and improvement is better than a diagnosis. She said that Dr Wood had called her to talk about my questions about possible thyroid causes for Lydia's troubles. She said that she is not considering that at all...she said that hypothyroidism does not cause these kinds of problems this early. She said that it is important that she take the thyroid medication because it will prevent other problems that could be caused by it, but she's not worried about that as a cause right now. Lydia's head growth did not fall off of the chart yet...Dr Hollman was pleased with that. There may have been a little drop from last time, but still in normal range...that is promising news. She was concerned, though, like all other drs, that her fontanel was very small. She said that the sutures were not closed (which is what dr Lutfallah wanted us to be sure of), but that the reason the fontanel has not gotten larger is because the brain has not forced it to. She explained, as Dr Superneau had, that the head and soft spot on the head grow because the brain grows...not the other way around. Fwehh...all very overwhelming...Thank you for your continued prayers...please pray for me to give my worries to God.
I think another thing that has gotten me a little shaken up is that Dr Hollman wants to keep Lydia on the ACTH shots now for the duration...I had really had my hopes up that she would stop it, but after talking to her, I feel like it is the right thing to do. It is just so overwhelming too. Dr. Hollman was pleased with Lydia's cooing and smiling that she saw today...she was also doing some cackling, as Dr Hollman called it. She feels like (and I do too) that the medicine must have something to do with it, especially since she hasn't had any more spasms since she started taking it. She said that it sometimes takes babies up to 2 weeks on the med to rid the spasms. She is also still puzzled by the fact that the EEG was normal again, but it does not mean that she is not having infantile spasms...there have been other babies with spasms and a normal EEG..just not many. I also brought a video tape of a portion of one of them, and she said that it was positively an infantile spasm. We will continue the shots once a day until Feb 1. We will then begin to wean her by giving it every other day and decreasing the dose every few times. She will complete the process on Feb 28 (I think....I have it written down.) We talked about the fact that her face will get really big (swollen). I looked at some pictures online of another baby that took it last night...that makes me sad too. It just looks so uncomfortable. Martin says he is not concerned with that at all...she needs it, and he's ok with it. I know she needs it too, and I know she'll be fine even when her face gets so big, but I hope it doesn't make me cry out of sympathy every time I look at her.
Dr Hollman thought that Lydia's head control was better too...still concerned that she is not picking her head up yet while on her belly. She wants us to keep working on that. She is also still concerned about the up-going big toes. She said it means that messages from the brain are not reaching the spinal cord properly (that's my layman's terms)...there was a name for it, but I can't remember that right now. A new concern: she found that her ankles are starting to stiffen. There was resistance when she tried to move them, and she didn't notice that at our last visit. She said that that could possibly be a sign of cerebral palsy later down the road. She still had no diagnosis for us, which she says is a good thing. Dr Hollman says that she likes to tell her parents it is better not to know, because if you know a name for it---it is always bad. She said that there are no diagnoses in neurology that are ok. She was encouraged by the cooing and smiling. She says that shows improvement, and improvement is better than a diagnosis. She said that Dr Wood had called her to talk about my questions about possible thyroid causes for Lydia's troubles. She said that she is not considering that at all...she said that hypothyroidism does not cause these kinds of problems this early. She said that it is important that she take the thyroid medication because it will prevent other problems that could be caused by it, but she's not worried about that as a cause right now. Lydia's head growth did not fall off of the chart yet...Dr Hollman was pleased with that. There may have been a little drop from last time, but still in normal range...that is promising news. She was concerned, though, like all other drs, that her fontanel was very small. She said that the sutures were not closed (which is what dr Lutfallah wanted us to be sure of), but that the reason the fontanel has not gotten larger is because the brain has not forced it to. She explained, as Dr Superneau had, that the head and soft spot on the head grow because the brain grows...not the other way around. Fwehh...all very overwhelming...Thank you for your continued prayers...please pray for me to give my worries to God.
Wednesday, January 9, 2008
Much Better
Hooray! The rest of her feedings today went much better. I switched back to the ready-to-feed formula and I added even more oatmeal to it. She ate better at all feedings after that.
OT with Teresa at home today:
Teresa was very impressed with how much Lydia has progressed since the last time she saw her...3 weeks ago. She actually picked her head up some while on the ball...something she hasn't done for me...she usually just cries and goes limp...now I know! She also was impressed that she can sustain her pacifier on her own for some periods of time. Teresa worked a little with her tracking, and she thinks that maybe her field of vision is better to the right because she loses sight of the toys right when you move them to the left. I'll ask the opthamologist about that at our next visit.
We see Dr Hollman tomorrow...I'll try to update results of that.
OT with Teresa at home today:
Teresa was very impressed with how much Lydia has progressed since the last time she saw her...3 weeks ago. She actually picked her head up some while on the ball...something she hasn't done for me...she usually just cries and goes limp...now I know! She also was impressed that she can sustain her pacifier on her own for some periods of time. Teresa worked a little with her tracking, and she thinks that maybe her field of vision is better to the right because she loses sight of the toys right when you move them to the left. I'll ask the opthamologist about that at our next visit.
We see Dr Hollman tomorrow...I'll try to update results of that.
This week
Monday, we saw Dr Wood for Lydia's re-check for her ear infection...both ears were clear of infection and fluid. Yeah! Yesterday, we saw Dr Lutfallah, the pediatric endocrinologist. She basically took a lot of info from me about Lydia's medical history and said that she would continue what Dr Wood had started with her with the thyroid medication. She switched it to a different brand, Levoxyl, because it is a pill that dissolves easily in only 1 ml of water. That may make it a little better for Lydia to take it. The pill she was taking before...I had to crush and mix with 5 ml of water...she would gag, choke, and reflux the entire time she was taking it. Hopefully, this new pill will solve those problems. My sister-in-law, Tiffany (Martin's sister), had done some research lately about thyroid problems in infants...and some symptoms that she saw made us optimistic that this might have been the cause of most of Lydia's problems. I asked both dr's about this, and I no longer am hopeful about that. Dr Wood said that Lydia's thyroid levels were checked at birth and at one month, and her levels were normal then. Her problems started pretty much at birth. Dr Lutfallah said that Lydia does not have hypothyroidism...she explained the difference....right now, I'm a little fuzzy about it. I also asked both dr's about the possibility of the Levothyroxine causing the spasms, and both thought that was not the case. Dr Lutfallah said that the thyroid med that she is taking is just replacing the hormone that the body normally produces itself, so it has no side effects. She said that there is a risk of side effects if babies are given too much, but there would also be other symptoms that Lydia does not exhibit...and her levels do not show that it is too much. She also said, as dr wood did, that this is relatively common in infants, and they usually have them take the meds until about 3 yrs. then they wean them off and test to be sure that levels are normal. She said that it is possible to wean them sooner, but the risks associated with the abnormal thyroid level are too great...mental retardation, hypotonia... She was concerned with the size of her fontanel, which Dr Superneau also noticed to be small. She said that as long as the sutures were still open, then her brain could grow as it would like...the risk is if the sutures were closing, then it would limit brain growth. I thought that was reason-enough to look into it, since we know that her brain growth has slowed. She called Dr Wood and he was going to check the results of the CT that she had in the hospital and talk to Dr Superneau to determine if another x-ray was necessary.
Although Lydia has still been pretty happy during her awake times, she has started her crying while she eats again. Yesterday, she did not eat well at all....taking 2-3 oz at each feeding, crying the entire time. I had tried to switch to the powder formula (because it is soo much cheaper), so I suspect that might have something to do with it...it is thinner, but has clumps and lots of air bubbles. I bought some more ready-to-feed formula last night....but, this morning she still cried a lot while she ate...though I did get her to finish almost 4 oz. She didn't get quite all of it at 30 minutes, since she was doing so much crying. I tried to add a little more oatmeal, since that usually seems to be the miracle cure each time she starts to reflux again...I didn't really see a change. I'll do some more experimenting the next time she eats. I don't really see her making the same reflux posture that she used to do, but it is definitely hurting her to eat. I just wish that I knew for sure what was causing the pain, so that I could try to stop it. Please keep her in your thoughts today. :)
Although Lydia has still been pretty happy during her awake times, she has started her crying while she eats again. Yesterday, she did not eat well at all....taking 2-3 oz at each feeding, crying the entire time. I had tried to switch to the powder formula (because it is soo much cheaper), so I suspect that might have something to do with it...it is thinner, but has clumps and lots of air bubbles. I bought some more ready-to-feed formula last night....but, this morning she still cried a lot while she ate...though I did get her to finish almost 4 oz. She didn't get quite all of it at 30 minutes, since she was doing so much crying. I tried to add a little more oatmeal, since that usually seems to be the miracle cure each time she starts to reflux again...I didn't really see a change. I'll do some more experimenting the next time she eats. I don't really see her making the same reflux posture that she used to do, but it is definitely hurting her to eat. I just wish that I knew for sure what was causing the pain, so that I could try to stop it. Please keep her in your thoughts today. :)
Monday, January 7, 2008
Great Day!
Lydia had another great day! A big 12 lbs. at the dr today!!! She has been so sweet and happy!
Our little rookie says "Geaux Tigers!"
Saturday, January 5, 2008
Oh Happy Day
My baby girl has been a different person today. The shot went well this morning...it's old hat to her now. Twice today after her feedings, she stayed awake for more than an hour...cooing, smiling, playing...loads of fun!! The whole family has had fun playing with her. This afternoon, I was giving her big kisses...and, after every kiss, she would coo at me...I said that she was telling me she loves me. I just couldn't wait to share this news!
Friday, January 4, 2008
2nd Shot Day
Today's shot went well again...I am sooo proud of my little lady! She takes it like a champ! Her weight today: 11 lbs. 15.5 oz. ....now, it was a different nurse with a different scale, so it may be a little inaccurate-but that measures a 3 oz. weight gain since yesterday. Weight gain and increased appetite are also side effects of the medication. Lydia usually takes about 24-25 oz. per day...today she took 28 oz. We've also started with a new nipple...Dr Brown's #4...she has done great!! I am so excited that she is drinking from a regular nipple that I have not tampered with...keep your fingers crossed that she continues to do well. This morning, she took 5 oz. in 17 minutes...a real record! It has recently been taking about 20-25 minutes per 4 oz bottle. Another side effect of the medicine has been increased sleepiness...like she needs that!?! I was so excited to get the exercise ball from Dottie, but I really haven't had much of a chance to put her on it because she has not been awake hardly at all. Once I wake her to eat, she looks alert while she takes her bottle, but very soon after she's done, she cries until she goes back to sleep..about 5-10 minutes. Other than that, she seems to be feeling ok....that makes me feel better about the whole situation.
Thursday, January 3, 2008
First Shot Day
The Home Health nurse came at about 2:00 today to give Lydia her first shot. She was a trooper!! She barely cried much at all! That made it a lot easier on her momma...though Audrey was still a little spooked. She skipped her nap because she wanted to watch everything that the nurse was doing. We first did some paperwork, then she took Lydia's vitals...blood pressure, temp, listened to her heart, weight (11 lbs. 12.5 oz.!), height, head circumference...then she began showing me how to set up to give the medicine. Audrey was enthralled the entire time until just before the nurse gave shot...she jumped up and backed up quickly across the room. We talked about it later...I think she just couldn't watch Lydia hurt...that's tough on all of us...good thing Lydia is so tough!! The nurse asked if I was nervous about learning to do it myself...I told her that I was sitting there thinking about who I could ask to do it for me. :) It didn't look like something hard to do...just hard to know that you are inflicting pain on your child. I relate it to the time that Audrey got her hand stuck in the treadmill and had 2nd degree burns. We had to clean it and redress it twice a day, and I think I dreaded it more than she did.
Anyway...possible good news about the shot...Dr. Hollman's nurse called today...the EEG was normal again. (Lydia sure is good at passing all their tests...EEG's, MRI's, CT scans, EKG's, etc, etc...they've all pretty much been normal.) Dr. Hollman wants us to keep our appt with her for the 10th and we'll discuss whether or not we'll continue the shots past that date.
You should see this outrageously expensive medicine...5 mL...that's 1 teaspoon!...Blue Cross settled on $24,000!!! Granny asked if it looked like liquid gold. :) For that price, it should have diamonds floating in it.
Since she should get the shot at near the same time everyday, we decided on 11:00. We'll do that each day until Dr. Hollman tells us otherwise.
Next Week's Schedule:
ACTHAR shot each day- 11:00
Monday- Lydia-Dr. Wood 9:30 (recheck for ears and 4-month check-up, though she will not get her 4 month shots since she is getting the ACTHAR right now.)
Tuesday- Lydia- Dr. Lutfallah- 12:30 (endocrinologist)
Wednesday- Audrey- Dr. Petite (check-up)
Thursday- Lydia- Dr. Hollman
Friday- Elise - speech therapy
Sweet story:
Martin has been playing around lately with a little guitar that Camryn gave to Audrey. Last night he was playing it a little while I was holding Lydia next to him. We swear that she started to sing while he was playing...it was so sweet!! Today, I was telling Audrey about it, so she started to play to Lydia...making up songs to sing to her...Lydia was loving it! It was so cute! Audrey said she was singing "God songs." "God loves you...anywhere you go in the gospel....the gospel reading..." She was so serious and has such a pretty voice...it brought peace in my heart ( and a little needed laughter). I told her that Maw D and all our other angels were watching and saying, "That's so beautiful!" I think I hurt her feelings tonight because I was laughing out loud...I couldn't help it...at the song she was making up with the guitar, "When I go to bed, I sing a lullaby to myself..." If you could hear how serious she is when she's singing, you'd see why it's so funny. :)
No spasms today...though I have a correction about yesterday. She did have one early yesterday morning...the days seem to run together sometimes, and I didn't remember that she had one yesterday until I read it in my notebook. That is really helping me to keep things straight.
My dad shared with me today that reading this blog has strengthened his faith. How wonderful and miraculous our God is! He has a purpose in all that happens to us...much greater than anything we could ever imagine. I haven't told my dad this...but, I remembered later...a prayer that I had forgotten that I prayed long ago...I prayed for my dad to become closer to God and if He so chose, to use me as a vessel in whatever way He saw fit. The awesome power of our loving God...it never ceases to amaze me!
Anyway...possible good news about the shot...Dr. Hollman's nurse called today...the EEG was normal again. (Lydia sure is good at passing all their tests...EEG's, MRI's, CT scans, EKG's, etc, etc...they've all pretty much been normal.) Dr. Hollman wants us to keep our appt with her for the 10th and we'll discuss whether or not we'll continue the shots past that date.
You should see this outrageously expensive medicine...5 mL...that's 1 teaspoon!...Blue Cross settled on $24,000!!! Granny asked if it looked like liquid gold. :) For that price, it should have diamonds floating in it.
Since she should get the shot at near the same time everyday, we decided on 11:00. We'll do that each day until Dr. Hollman tells us otherwise.
Next Week's Schedule:
ACTHAR shot each day- 11:00
Monday- Lydia-Dr. Wood 9:30 (recheck for ears and 4-month check-up, though she will not get her 4 month shots since she is getting the ACTHAR right now.)
Tuesday- Lydia- Dr. Lutfallah- 12:30 (endocrinologist)
Wednesday- Audrey- Dr. Petite (check-up)
Thursday- Lydia- Dr. Hollman
Friday- Elise - speech therapy
Sweet story:
Martin has been playing around lately with a little guitar that Camryn gave to Audrey. Last night he was playing it a little while I was holding Lydia next to him. We swear that she started to sing while he was playing...it was so sweet!! Today, I was telling Audrey about it, so she started to play to Lydia...making up songs to sing to her...Lydia was loving it! It was so cute! Audrey said she was singing "God songs." "God loves you...anywhere you go in the gospel....the gospel reading..." She was so serious and has such a pretty voice...it brought peace in my heart ( and a little needed laughter). I told her that Maw D and all our other angels were watching and saying, "That's so beautiful!" I think I hurt her feelings tonight because I was laughing out loud...I couldn't help it...at the song she was making up with the guitar, "When I go to bed, I sing a lullaby to myself..." If you could hear how serious she is when she's singing, you'd see why it's so funny. :)
No spasms today...though I have a correction about yesterday. She did have one early yesterday morning...the days seem to run together sometimes, and I didn't remember that she had one yesterday until I read it in my notebook. That is really helping me to keep things straight.
My dad shared with me today that reading this blog has strengthened his faith. How wonderful and miraculous our God is! He has a purpose in all that happens to us...much greater than anything we could ever imagine. I haven't told my dad this...but, I remembered later...a prayer that I had forgotten that I prayed long ago...I prayed for my dad to become closer to God and if He so chose, to use me as a vessel in whatever way He saw fit. The awesome power of our loving God...it never ceases to amaze me!
Wednesday, January 2, 2008
OT visit today
Today's visit was okay. Terry noticed that Lydia was not holding her head up on the ball as well as she did last week. She aslo noticed some "twitching" like the trembling I described yesterday. She gave us some things to do at home to work with her:
- facilitate play with her hands in her field of vision. She showed me how to put Lydia's hand on a toy (my nose, etc.) while she is looking at it...she said it will encourage hand-eye coordination.
-put pressure on her chest while pulling her up to encourage her to tuck her chin and hold her head from lagging back
-put pressure on her back when she is on her tummy (preferrably on the ball) to encourage her to hold up her head with her hands under her.
Big thanks to my cousin Dottie for giving us an exercise ball to use with Lydia!!
Dr. Hollman suggested that I keep a notebook of all the spasms that Lydia has so that we'll know exactly how severe it is and we'll know when it stops (after the medicine). I've decided to just keep a detailed log of everything....feedings, naps, odd behavior, etc. I think it will help me to be more precise when I talk to the dr's...I am not very good at estimating or remembering things.
No spasms so far today!! That's a good thing...though I have noticed the twitching more.
The medication is expected to arrive tomorrow. Pray for all of us when dealing with this.
Thank you again for all of the encouraging sentiments I've heard in the last week. Please help me to stay positive and prayerful. I do not need sadness or sympathy. One day at a time with God by our sides is the key.
- facilitate play with her hands in her field of vision. She showed me how to put Lydia's hand on a toy (my nose, etc.) while she is looking at it...she said it will encourage hand-eye coordination.
-put pressure on her chest while pulling her up to encourage her to tuck her chin and hold her head from lagging back
-put pressure on her back when she is on her tummy (preferrably on the ball) to encourage her to hold up her head with her hands under her.
Big thanks to my cousin Dottie for giving us an exercise ball to use with Lydia!!
Dr. Hollman suggested that I keep a notebook of all the spasms that Lydia has so that we'll know exactly how severe it is and we'll know when it stops (after the medicine). I've decided to just keep a detailed log of everything....feedings, naps, odd behavior, etc. I think it will help me to be more precise when I talk to the dr's...I am not very good at estimating or remembering things.
No spasms so far today!! That's a good thing...though I have noticed the twitching more.
The medication is expected to arrive tomorrow. Pray for all of us when dealing with this.
Thank you again for all of the encouraging sentiments I've heard in the last week. Please help me to stay positive and prayerful. I do not need sadness or sympathy. One day at a time with God by our sides is the key.
Tuesday, January 1, 2008
Happy New Year!
Hope everyone had a great start to 2008! We had a pretty good day. Our family had breakfast at McD's this morning, then headed to Grandma and Paw-Paw's to celebrate with black-eyed peas and cabbage for lunch. Thanks to Grandma for all the good fixin's. Lydia's routine has remained the same...eating 4 oz. consistently, still sleeping a lot. She had one spasm this evening. Martin thinks that they appear to be getting more intense...he says he notices her eyes to bulge each time she does it. I haven't really noticed that. She did also have a little odd behavior later. I noticed that she had a little steady tremble for a brief time...then that she was sluggish to open her left eye for a few seconds. It looked like she was winking, but that her left eye-lid was very heavy. It reminded me of something Dr Superneau asked us about at our visit. He asked if we had ever noticed that she stopped using one side of her body...temporarily...sort of like effects of a stroke. A characteristic of one of the syndromes that he is considering is stroke-like symptoms without a stroke...losing movement in one side of the body temporarily. I'm not sure if what I saw is exactly what Dr Superneau described, but I'll mention it to him when we see him again anyway (in 2 months).
Lydia has an OT appt with Terry at Neurotherapy tomorrow morning...we'll be sure to bundle up tight. If anyone knows somebody who has an exercise ball that they could loan us for a little while, please let us know. At our last visit, Terry had Lydia on the exercise ball practicing picking up her head. She said that the incline (reduced gravity) and the rocking motion help Lydia to pick her head up. Martin had borrowed one from his school's weight room a while back when Elise was using it for her therapy, but he brought it back..and, now that the school is under construction, he has no idea where to find it. Just let me know if you have one to loan. Thanks!
A funny story:
I was trying to explain the EEG to Audrey yesterday. I told her that we went for a test on Lydia's brain. I said, "It measures Lydia's brain waves." She so innocently and seriously asked, "Lydia's brain waves at people??" I laughed loud enough to startle the neighbors. Oh, how kids can always bring humor to difficult situation!
Lydia has an OT appt with Terry at Neurotherapy tomorrow morning...we'll be sure to bundle up tight. If anyone knows somebody who has an exercise ball that they could loan us for a little while, please let us know. At our last visit, Terry had Lydia on the exercise ball practicing picking up her head. She said that the incline (reduced gravity) and the rocking motion help Lydia to pick her head up. Martin had borrowed one from his school's weight room a while back when Elise was using it for her therapy, but he brought it back..and, now that the school is under construction, he has no idea where to find it. Just let me know if you have one to loan. Thanks!
A funny story:
I was trying to explain the EEG to Audrey yesterday. I told her that we went for a test on Lydia's brain. I said, "It measures Lydia's brain waves." She so innocently and seriously asked, "Lydia's brain waves at people??" I laughed loud enough to startle the neighbors. Oh, how kids can always bring humor to difficult situation!
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