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!"
Monday, January 7, 2008
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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