Lydia had her EEG this morning at 10:00...went well. We will have to wait for Dr Hollman to interpret the results, but the guy who conducted the test this morning said that he didn't see any abnormalities.
The drug company called this morning to tell us that they wouldn't be able to ship the ACTH (the injection medication for the spasms) until Thursday, the 3rd. We also spoke with Woman's Home Health care...they will come every day for the first week to teach us how to administer the shots. They will also continue to come 3 days per week for the 2 months to take her blood pressure and draw blood once a week to check for infection. We were glad to hear that our co-pay for the multiple-thousand dollar drug will only be about $150.
Dr. Wood called this morning to tell us that Lydia's thyroid levels were normal, but a little too normal...whatever that means. He wants us to cut her dose of medication in half. I will just have to break the pill in half before crushing it to give to her each morning.
That's all for now. I'll check back when we have our results from the EEG and after our first day with home health.
Monday, December 31, 2007
Sunday, December 30, 2007
More spasms
Just when I thought (or hoped might be a better word) that Lydia had stopped having the infantile spasms, she had two more tonight. A little after 7:00 I was changing her on the changing table in the bathroom while Martin was getting bath water ready for the big girls to take a bath. When I picked her up, I felt the trembling motion and knew right away that it was the beginning of a spasm. I put her down and told Martin to watch with me. After the first few times, he remembered that Dr Superneau had told us to try to video tape it so that Dr Hollman could see exactly what it looked like. By the time he got back with the camera, he was able to video about 3 trembles. She did it a total of 9-10 times. I was trying to watch the clock to determine how long it lasted and how much time was between each one, but my brain was just frozen for some reason. I was looking at the clock and could not remember what time it was since the last time I glanced at it. I was so intent on looking at her. I was also trying to count between each one and was having a hard time doing that too. It seemed as if it was 10 minutes total, but I know that can't be right because it was about 20-45 seconds between each one (or so I think).
Then, at about 11:00 tonight, I changed her diaper and she began another episode on the changing table. Martin came with the video camera again, but she stopped after about 2 times. So, I brought her back to the living room where I was feeding her...then, she did it 8 more times while I was holding her on the couch.
I am no longer doubtful that she'll need the injection treatment. We'll wait to hear tomorrow if she'll do the EEG. I'll try to update tomorrow as soon as I have new information.
Then, at about 11:00 tonight, I changed her diaper and she began another episode on the changing table. Martin came with the video camera again, but she stopped after about 2 times. So, I brought her back to the living room where I was feeding her...then, she did it 8 more times while I was holding her on the couch.
I am no longer doubtful that she'll need the injection treatment. We'll wait to hear tomorrow if she'll do the EEG. I'll try to update tomorrow as soon as I have new information.
Doing Well
Things are still going well here at the Poche house. Most of us are slowly, but surely getting rid of the bad colds we've all had. Audrey and I are still hanging on to a little cough, Lydia...a little congestion, and Martin...swollen glands.
We will wait to hear tomorrow about plans for the EEG. It will be done at the Lake, and the guy who does them (the only person handling all EEGs at the Lake) will call us in the morning after he sees his schedule to let us know if he can fit Lydia in and what time. If he is too booked, we will postpone until Wednesday. I'm going to try to call Dr. Hollman's office in the morning to talk to her about the EEG and the plan for the shots. I want to let her know that Lydia has not had any more of the infantile spasm episodes since Thursday (in Dr Superneau's office). She was a little confused about the fact that they have been so infrequent. She said that normally, when babies have infantile spasms, they have about 3-4 episodes per day. Lydia has never had them that frequently. There was a 2-week span between the first and second one. Since then, it had become once a day or every other day. I assumed (as Dr hollman) did, that they would become more frequent...but they haven't. Dr hollman thought that the EEG might show abnormality tomorrow since she was having them more....now she's not, so I don't know if Dr Hollman's plan will change or not. I'll call in the morning.
Thank you again for all of the words of encouragement I have received and the prayers and faith. I wanted to share something with you that always works to strengthen my faith even more. I have a prayer journal that I got for Mother's Day a couple of years ago (when I was pregnant for Elise). I don't write in it every day or at any regular intervals...only when I feel inclined to. I took it out this morning, and it had actually been since Sept 5 that I wrote in it last...I've been trying to pray on the run for the last few months :) Every time I write in it, I try to read at least a few entries that I've written before. I have to tell you that EVERY single prayer that I have written has been answered in one way or another. Sometimes I don't even remember the prayers I've requested in the past, and I am always in awe at how I know from my life that the prayers have been answered. I encourage anyone to do it because it is key to strengthening faith in God. It fills me with such closeness to the Holy Spirit to see in writing how He has NEVER let me down. I can't tell you how much it has helped me. It is much of the reason why I know that God will be with us every step of the way through any trials or challenges that Lydia and our family have. We are all so very blessed!
We will wait to hear tomorrow about plans for the EEG. It will be done at the Lake, and the guy who does them (the only person handling all EEGs at the Lake) will call us in the morning after he sees his schedule to let us know if he can fit Lydia in and what time. If he is too booked, we will postpone until Wednesday. I'm going to try to call Dr. Hollman's office in the morning to talk to her about the EEG and the plan for the shots. I want to let her know that Lydia has not had any more of the infantile spasm episodes since Thursday (in Dr Superneau's office). She was a little confused about the fact that they have been so infrequent. She said that normally, when babies have infantile spasms, they have about 3-4 episodes per day. Lydia has never had them that frequently. There was a 2-week span between the first and second one. Since then, it had become once a day or every other day. I assumed (as Dr hollman) did, that they would become more frequent...but they haven't. Dr hollman thought that the EEG might show abnormality tomorrow since she was having them more....now she's not, so I don't know if Dr Hollman's plan will change or not. I'll call in the morning.
Thank you again for all of the words of encouragement I have received and the prayers and faith. I wanted to share something with you that always works to strengthen my faith even more. I have a prayer journal that I got for Mother's Day a couple of years ago (when I was pregnant for Elise). I don't write in it every day or at any regular intervals...only when I feel inclined to. I took it out this morning, and it had actually been since Sept 5 that I wrote in it last...I've been trying to pray on the run for the last few months :) Every time I write in it, I try to read at least a few entries that I've written before. I have to tell you that EVERY single prayer that I have written has been answered in one way or another. Sometimes I don't even remember the prayers I've requested in the past, and I am always in awe at how I know from my life that the prayers have been answered. I encourage anyone to do it because it is key to strengthening faith in God. It fills me with such closeness to the Holy Spirit to see in writing how He has NEVER let me down. I can't tell you how much it has helped me. It is much of the reason why I know that God will be with us every step of the way through any trials or challenges that Lydia and our family have. We are all so very blessed!
Friday, December 28, 2007
Thank you
I want to thank everyone who I've spoken with by voice or type in the last couple of days...so many words of encouragement and prayer. Our family is very lucky!
Lydia had a good day today...eating like a little piglet...most bottles- 4 oz was just not enough, so by all means, I gave the little lady a little more! :) We went to the lab for her blood test to check her thyroid levels...they did a foot stick this time, and she did ok. It just takes so long when they do the foot stick and she, of course, cries the whole time...I would too. She got through it though...and was smiling as soon as they were done.
A sweet quote from an innocent child....
On the way home from the second dr's office yesterday, Audrey asked, "Did she do it?" I didn't know what she was talking about so I asked, "Who?" She said, "The doctor." Intrigued, I asked, "Did she do what?" Her reply: "Did she fix Lydia?" I told her that all the doctors were working on it, and they weren't sure exactly what needed to be fixed quite yet. She seemed to be satisfied with that..."Oh."
Funny stuff with Elise-
She is starting to develop a little more mature sense of humor...making jokes herself. I've said how she likes to repeat stuff over and over again lately. Last night, Mom and Dad were here...mom picked up food from the deli at Walmart. When Elise started eating, I gave her some ketchup...when she started to ask for more, I said, "I'm going to pick up the ketchup." Then she started saying, "Momma up up..." which of course meant, "Momma picked up the ketchup." Then she would shake her head "no" and say, "Maw-Maw up up.." and we would say "no, Grandma didn't pick up the ketchup." I asked, "Who picked up the ketchup?" and she said, "See up up" (pointing to herself with a big grin) which meant--Elise picked up the ketchup...we could tell that she was trying to make a joke...so we bought in: "Elise didn't pick up the ketchup!!" She kept repeating over and over...all the different people in the room. The silly grin on her face was so cute...I could tell that she thought it was hilarious and that she was creating the joke. It made my day.....needed that!
Lydia had a good day today...eating like a little piglet...most bottles- 4 oz was just not enough, so by all means, I gave the little lady a little more! :) We went to the lab for her blood test to check her thyroid levels...they did a foot stick this time, and she did ok. It just takes so long when they do the foot stick and she, of course, cries the whole time...I would too. She got through it though...and was smiling as soon as they were done.
A sweet quote from an innocent child....
On the way home from the second dr's office yesterday, Audrey asked, "Did she do it?" I didn't know what she was talking about so I asked, "Who?" She said, "The doctor." Intrigued, I asked, "Did she do what?" Her reply: "Did she fix Lydia?" I told her that all the doctors were working on it, and they weren't sure exactly what needed to be fixed quite yet. She seemed to be satisfied with that..."Oh."
Funny stuff with Elise-
She is starting to develop a little more mature sense of humor...making jokes herself. I've said how she likes to repeat stuff over and over again lately. Last night, Mom and Dad were here...mom picked up food from the deli at Walmart. When Elise started eating, I gave her some ketchup...when she started to ask for more, I said, "I'm going to pick up the ketchup." Then she started saying, "Momma up up..." which of course meant, "Momma picked up the ketchup." Then she would shake her head "no" and say, "Maw-Maw up up.." and we would say "no, Grandma didn't pick up the ketchup." I asked, "Who picked up the ketchup?" and she said, "See up up" (pointing to herself with a big grin) which meant--Elise picked up the ketchup...we could tell that she was trying to make a joke...so we bought in: "Elise didn't pick up the ketchup!!" She kept repeating over and over...all the different people in the room. The silly grin on her face was so cute...I could tell that she thought it was hilarious and that she was creating the joke. It made my day.....needed that!
Thursday, December 27, 2007
More info
It has been a long day...let me see if I can remember all of the information we received today. We arrived at our appt with Dr Superneau at 9:15...and didn't leave his office until 11:30. He is really concerned about all of the combined factors about Lydia. At the last visit, he said that if all was well by now, we would know that we worried for nothing...now he is leaning more to the side of "something is not right with her nervous system." Here are the issues: feeding problems, weight gain problems, developmental delays, upturned big toes, not holding her head up yet, lactic acid elevation, thyroid concerns, acid reflux and possible seizures. She actually had one of her episodes while we were at his office. Dr Superneau thought positively that it was seizure-like activity...I've also been thinking that in the last couple of days, since it always occurs in clusters. I haven't done a good job of keeping track either...my estimating skills aren't the best...so, this time I actually timed it: She had her trembling spell 8 times in 4 minutes. Another big concern he had was that her head growth has slowed down. Last visit, it was in the 10th percentile...this time, it was just under the 3rd percentile. Also, her soft spot was small...this all indicates that her brain is not growing as it should. Since the head is usually the last to be affected by malnutrition (and she has been eating fairly well anyway) he doesn't feel that it is an effect of poor nutrition. He feels that it is a defect in the function of her nervous system.
After her seizing episode, he called Dr Hollman to discuss the episode, the lack of head growth, and to find out the results of the EEG...since Dr Hollman (neurologist) is the person who interprets the results. He came back out to talk to us and said that Dr Hollman told him that the results of the EEG were normal, but in light of their conversation, she wanted us to see her now. I asked if we could have lunch first (Martin and the girls had already walked downstairs to Subway), and he said that she was waiting for us right then....a little bone-chilling.
Dr Hollman and Dr Superneau both agreed that there were a couple of disorders/syndromes that they suspect for Lydia...though Superneau doesn't want to test for them now because we would sort of be on a fishing expedition and the treatment for the symptoms would not change at this point. He wants us to wait a while longer to see how her symptoms progress to help us narrow the possibilities before ordering very expensive tests. The disorders that come to mind for them are Rett Syndrome or some type of Mitochondrial disease, such as MELAS. I put some links below...none of these have very good outcomes. To put it in Dr. Hollman's words, "Rett is bad. It is very bad." After reading up on some of these things, it is easy to see why they suspect them with Lydia...she has many of the symptoms. Although, Elise had many of the symptoms of William's syndrome and was found not to have it. All I know is that it is what it is, and we will deal with whatever comes our way. My hope is that Lydia will grow and develop as normally as possible. My prayer is that God teaches and molds me to be the kind of mother that she needs. I've had some time to reflect on this situation over the past couple of months, and I feel like this...God, for some reason felt that there should be a Lydia in this world...created perfectly the way that she is (and she must be perfectly the way that God wanted her because God doesn't make mistakes)...and...for some reason he thought that Martin and I would be the best parents to care for her...what a compliment and an honor! I know that He won't abandon us, so I am up to the challenge with Him by our sides. My friend, Sabrina, sent me an email recently...She said that God doesn't give us more than we can handle, so He must really have a lot of confidence in me. I don't know if that's true, but it's kind of nice to think of it that way.
Back to the seizure-type episodes...Superneau and Hollman agree that it is probably infantile spasms. Everything about what we describe points to this...everything except the results of the EEG. But, as Dr Superneau said...we treat the patient, not the paper. Dr. Hollman wants to treat this as soon as possible so that we don't risk any further brain damage. Lydia will have another EEG next Monday to see if maybe we caught it too early, and that is the reason that it was normal...possibly by next Monday we will see some abnormalities in the EEG. Regardless, we will start treatment next Monday....daily injections for one month followed by a weaning process: 1 shot every other day for a month. Home health will come to do it for a week and then they will teach us how to do it for the remaining period. Dr Hollman said that this treatment almost always stops the spasms. She will begin the insurance process now because they almost always try to decline to pay for it....one vile of medication that holds 20 doses costs $29,000. Unbelievable!! She also said that there are some side effects to the medication: increased appetite and weight are two of the side effects (sounds like a good thing for Lydia, but Hollman assured me that it was not really a good thing)...along with swelling and puffiness of the face, increased blood pressure, and extreme irritability. She will want her blood pressure to be taken three times a week while receiving the injections and take regular blood tests for something else...can't remember right now what it is. In the meantime, we will go back tomorrow for a blood test to check her thyroid levels to be sure that the medication for that is helping.
I'm sorry I've declined to talk about this with everyone who has called...it is just, as you see, SO MUCH info. Although I have complete trust in God, this is all so overwhelming and stressful. Please pray for Lydia and our family.
Rett Syndrome
http://www.healthnewsflash.com/conditions/rett_syndrome.php
Mitochondrial diseases
http://www.mda.org/publications/Quest/q65mito.html
MELAS
http://www.medicinenet.com/melas_syndrome/article.htm
After her seizing episode, he called Dr Hollman to discuss the episode, the lack of head growth, and to find out the results of the EEG...since Dr Hollman (neurologist) is the person who interprets the results. He came back out to talk to us and said that Dr Hollman told him that the results of the EEG were normal, but in light of their conversation, she wanted us to see her now. I asked if we could have lunch first (Martin and the girls had already walked downstairs to Subway), and he said that she was waiting for us right then....a little bone-chilling.
Dr Hollman and Dr Superneau both agreed that there were a couple of disorders/syndromes that they suspect for Lydia...though Superneau doesn't want to test for them now because we would sort of be on a fishing expedition and the treatment for the symptoms would not change at this point. He wants us to wait a while longer to see how her symptoms progress to help us narrow the possibilities before ordering very expensive tests. The disorders that come to mind for them are Rett Syndrome or some type of Mitochondrial disease, such as MELAS. I put some links below...none of these have very good outcomes. To put it in Dr. Hollman's words, "Rett is bad. It is very bad." After reading up on some of these things, it is easy to see why they suspect them with Lydia...she has many of the symptoms. Although, Elise had many of the symptoms of William's syndrome and was found not to have it. All I know is that it is what it is, and we will deal with whatever comes our way. My hope is that Lydia will grow and develop as normally as possible. My prayer is that God teaches and molds me to be the kind of mother that she needs. I've had some time to reflect on this situation over the past couple of months, and I feel like this...God, for some reason felt that there should be a Lydia in this world...created perfectly the way that she is (and she must be perfectly the way that God wanted her because God doesn't make mistakes)...and...for some reason he thought that Martin and I would be the best parents to care for her...what a compliment and an honor! I know that He won't abandon us, so I am up to the challenge with Him by our sides. My friend, Sabrina, sent me an email recently...She said that God doesn't give us more than we can handle, so He must really have a lot of confidence in me. I don't know if that's true, but it's kind of nice to think of it that way.
Back to the seizure-type episodes...Superneau and Hollman agree that it is probably infantile spasms. Everything about what we describe points to this...everything except the results of the EEG. But, as Dr Superneau said...we treat the patient, not the paper. Dr. Hollman wants to treat this as soon as possible so that we don't risk any further brain damage. Lydia will have another EEG next Monday to see if maybe we caught it too early, and that is the reason that it was normal...possibly by next Monday we will see some abnormalities in the EEG. Regardless, we will start treatment next Monday....daily injections for one month followed by a weaning process: 1 shot every other day for a month. Home health will come to do it for a week and then they will teach us how to do it for the remaining period. Dr Hollman said that this treatment almost always stops the spasms. She will begin the insurance process now because they almost always try to decline to pay for it....one vile of medication that holds 20 doses costs $29,000. Unbelievable!! She also said that there are some side effects to the medication: increased appetite and weight are two of the side effects (sounds like a good thing for Lydia, but Hollman assured me that it was not really a good thing)...along with swelling and puffiness of the face, increased blood pressure, and extreme irritability. She will want her blood pressure to be taken three times a week while receiving the injections and take regular blood tests for something else...can't remember right now what it is. In the meantime, we will go back tomorrow for a blood test to check her thyroid levels to be sure that the medication for that is helping.
I'm sorry I've declined to talk about this with everyone who has called...it is just, as you see, SO MUCH info. Although I have complete trust in God, this is all so overwhelming and stressful. Please pray for Lydia and our family.
Rett Syndrome
http://www.healthnewsflash.com/conditions/rett_syndrome.php
Mitochondrial diseases
http://www.mda.org/publications/Quest/q65mito.html
MELAS
http://www.medicinenet.com/melas_syndrome/article.htm
Wednesday, December 26, 2007
Quick Catch-up
A very fun, but much too quickly passing Christmas this year! Lots of good time spent with family...though everyone in our house is sick right now. We are working on getting everyone better.
Lydia had her 4-month check up today, or so she was supposed to. Since she was sick, he didn't do the check-up..checked her out and found that she has an ear infection in her right ear and fluid in her left ear. This is the first sign of ear troubles...probably stemming from her cold and congestion. Weight gain was right on target!!! She is now weighing 11 lbs. 4.5 oz. That is about 6 oz in 6 days...exactly what the dr would like to see.
She is still having her little trembling episodes...I'm not sure what it is now. The results from her EEG should be in tomorrow...hopefully. She was a perfect angel for the test on Christmas Eve. She had to stay awake longer than she EVER has, and she dealt with it like a champ. We were so proud of her!!!
I asked Dr Wood today about the amount of time she spends sleeping...it seems quite excessive...8-10 hours at night...during the day, she'll eat for 20-30 minutes, then stay awake for about 30 minutes before she's ready to nap again. After that, I have to wake her when it's time to eat again (I feed her every 3 hours.) If I don't wake her, she'll sleep 5-6 hours at a time, and I'm afraid she won't get enough calories in that way. Dr Wood said that has always been a concern to him...it just joins all the other issues: feeding difficulties, difficulty gaining weight, excessive sleeping. Dr. Wood thought she looked good today...she actually looked at him a couple of times...that's the first time he's seen her fixate at all, though she has been doing that more at home. He also noticed the beginning of her little double chin...we are so proud of that double chin!!!
Excitement with Elise!! Talking up a storm!!! She is now frequently putting two words together (or signs with words) and sometimes 3 words!!! She doesn't always say them back to back...she'll wait for a response first before saying the second word but they clearly go together. Example: Today she said "change" (with the sign) ...and after I repeated "change"...she said "diaper" Then she said, "poop." Audrey spent the night at my mom's a few nights ago with her big cousins to bake Christmas cookies, and Martin and I noticed that Elise was a different person with her gone! She was just communicating like she had been doing it for a year now...amazing! We guess Audrey just always says everything for her, so she doesn't use words as much when she is around. It was so cute...I asked who was on her cup, and she said, "Nanna Caus"....Santa Claus!!! She is using the /t/ sound very consistently now...mostly at the end of words, but very well pronounced! She is making progress by leaps and bounds lately! I can't even remember all the things she's been saying.....
Audrey has been doing much better lately. I am trying to concentrate on making "Audrey and Mommy time." I know she needs it. Now that Christmas is over, I am expecting to have more time to spend with each of my girls to fulfill their needs.
We go for our appointment with Dr Superneau tomorrow. Hopefully we'll get some more info. Martin is coming too so that he can ask any questions he may have. Dr Wood said that we'll need to check Lydia's thyroid level soon since she's been on the meds for about 2 weeks. We'll see the endocrinologist soon, as well as the opthamologist and neurologist....all appts coming up in January. I also asked Dr Wood about seeing a second GI dr to brainstorm solutions for Lydia. He said he'd be glad to set us up with Dr Alberti, so that will probably be soon too.
I'll try to update again with results of the EEG and news from dr superneau.
Lydia had her 4-month check up today, or so she was supposed to. Since she was sick, he didn't do the check-up..checked her out and found that she has an ear infection in her right ear and fluid in her left ear. This is the first sign of ear troubles...probably stemming from her cold and congestion. Weight gain was right on target!!! She is now weighing 11 lbs. 4.5 oz. That is about 6 oz in 6 days...exactly what the dr would like to see.
She is still having her little trembling episodes...I'm not sure what it is now. The results from her EEG should be in tomorrow...hopefully. She was a perfect angel for the test on Christmas Eve. She had to stay awake longer than she EVER has, and she dealt with it like a champ. We were so proud of her!!!
I asked Dr Wood today about the amount of time she spends sleeping...it seems quite excessive...8-10 hours at night...during the day, she'll eat for 20-30 minutes, then stay awake for about 30 minutes before she's ready to nap again. After that, I have to wake her when it's time to eat again (I feed her every 3 hours.) If I don't wake her, she'll sleep 5-6 hours at a time, and I'm afraid she won't get enough calories in that way. Dr Wood said that has always been a concern to him...it just joins all the other issues: feeding difficulties, difficulty gaining weight, excessive sleeping. Dr. Wood thought she looked good today...she actually looked at him a couple of times...that's the first time he's seen her fixate at all, though she has been doing that more at home. He also noticed the beginning of her little double chin...we are so proud of that double chin!!!
Excitement with Elise!! Talking up a storm!!! She is now frequently putting two words together (or signs with words) and sometimes 3 words!!! She doesn't always say them back to back...she'll wait for a response first before saying the second word but they clearly go together. Example: Today she said "change" (with the sign) ...and after I repeated "change"...she said "diaper" Then she said, "poop." Audrey spent the night at my mom's a few nights ago with her big cousins to bake Christmas cookies, and Martin and I noticed that Elise was a different person with her gone! She was just communicating like she had been doing it for a year now...amazing! We guess Audrey just always says everything for her, so she doesn't use words as much when she is around. It was so cute...I asked who was on her cup, and she said, "Nanna Caus"....Santa Claus!!! She is using the /t/ sound very consistently now...mostly at the end of words, but very well pronounced! She is making progress by leaps and bounds lately! I can't even remember all the things she's been saying.....
Audrey has been doing much better lately. I am trying to concentrate on making "Audrey and Mommy time." I know she needs it. Now that Christmas is over, I am expecting to have more time to spend with each of my girls to fulfill their needs.
We go for our appointment with Dr Superneau tomorrow. Hopefully we'll get some more info. Martin is coming too so that he can ask any questions he may have. Dr Wood said that we'll need to check Lydia's thyroid level soon since she's been on the meds for about 2 weeks. We'll see the endocrinologist soon, as well as the opthamologist and neurologist....all appts coming up in January. I also asked Dr Wood about seeing a second GI dr to brainstorm solutions for Lydia. He said he'd be glad to set us up with Dr Alberti, so that will probably be soon too.
I'll try to update again with results of the EEG and news from dr superneau.
Saturday, December 22, 2007
A Little Scare
Tonight we had our Christmas party with my dad's family at my grandmother's house. It was a fun time. Towards the end of the night, my mom took Lydia into the bedroom to feed her her medicine (Nexium)...a few minutes later, she called out to us frantically. Lydia had started to choke and gag on her medicine and it looked as if she stopped breathing a couple of times. She was doing sort of the same thing that she's done a few times in the past couple of days, but she was having more trouble catching her breath. She's been so congested that it is causing these gagging and choking fits. The good news is that now she can take some medicine for it...the dr's were not allowing us to give her anything for the congestion because she is so young. They said that the new guidelines are to avoid decongestants until age 2. I took Lydia and Elise to the dr's office today to check them out before the holidays to make sure that they didn't have any real sickness besides a cold. Dr. Ramey confirmed that they both just have really bad colds. He also said that since the humidifier, suctioning, and inclined bed position are not really helping, we could go ahead and give her some Benadryl. She's had two doses so far...I think it is helping...kind of hard to tell. Anyway, she is sleeping well now...still very loud breathing, but she seems to be at rest. Please continue to pray for our girl. Martin said tonight (and I agreed) that sometimes we wish we could just fast-forward about a year to get through all of these scary, painful ailments. It is so hard to watch her in pain and so scary to feel a little helpless. Jory said tonight that he has never seen anyone as stopped up as she is now. My poor baby. And, of course, her feedings are not going as well. Just like all of us, I think she has less of an appetite because of the sinus drip. I was trying to get her to take more than 2 oz tonight...with no luck when Martin said..."I think we can give her a break. Anytime your mom says, "Do you think I should call 911?" I think we can let it slide if the next feeding doesn't go as well." I guess he has a point.
Friday, December 21, 2007
EEG
EEG is scheduled...for Christmas Eve!! We have to be at the General-MidCity for 7:45. We have to wake Lydia between 4 and 5:00 am and keep her awake until the procedure...mission impossible! We'll do what we can...she doesn't usually stay awake for more than an hour at a time. She had a couple of those little episodes again today...I am almost positive that it is not seizures, but I'm glad we're checking it out just in case.
Lydia developed her same nasty congestion again today...it got progressively worse throughout the day...you can now hear her breathing throughout the whole house. It is so pitiful, poor baby! I have been really watching her and her sisters closely because Elise brought home a note from Mother's Day Out last week that someone in her class was diagnosed with RSV. Lydia and Elise both have had runny noses since yesterday. Audrey just woke up a little while ago sounding congested. I'd assumed that Elise's was just her allergies, but I'm not sure. I pray that none of them get the virus. I'd like for them to be healthy for Christmas so that they can enjoy it.
Feeding has gone fairly well today...though the congestion has impacted it. She has some episodes of gagging and spitting up, seemingly due to the sinus drip. I feel so bad for her.
I have lately been getting more and more excited about Elise's speech. I'm not sure that she really sounds any better...I'm just having an easier time figuring out what she's saying. I was so excited (and she was too) tonight to finally figure out a word that she's been saying lately...she sort of grunts and says "au." Tonight she was trying to pull the top off of a marker when she said it. I finally realized she was saying "hard"...like it was too hard for her to do it. It is so funny that she picked up that little grunt that we usually do when we try to do something that is too hard. She has also been doing a lot of repeating (which also helps me to understand what she's saying)...she'll say something, wait for a response, and then say it again...and again, and again. Suzanne says it is good practice for her to repeat things. She has also been trying to put two words together...though not always with words. She'll usually shake her head while saying something...which means no/not/opposite of the word she is saying. Tonight, Grandma was here making a snowman craft with the girls with Ivory Snow...Elise has some sensory issues with texture, so she didn't want anything to do with touching that messy sticky stuff. She kept pointing to the snowman, shaking her head, and saying "touch." which of course meant that she didn't want to touch it. (And yes Suzanne, she said the word touch very clearly!! Exciting!) The /t/ sound has been the focus for a while now...she is starting to be able to vocalize it.
We've also lately been dealing with some behavior issues with Audrey. It is pretty clear that it is from jealousy because of a lack of attention. Since Lydia and Elise need so much, they do seem to get most of the attention at our house. Also, since Elise is starting to do and say much more lately, I notice that we are always watching her closely to see what she's doing and getting very excited about her accomplishments. Audrey has not lashed out at Elise, but she is throwing temper tantrums in an attempt to get attention. We are trying to address those issues while also attempting some preventive measures by spending more quality time with her. Since time is not in real abundance at our house these days, it has been challenging...though I guess that is the way parenting is and should be. We'll just keeping doing the best we can to make all of our girls as happy and healthy as we can.
Please pray that our girls get healthy and feel better soon.
Lydia developed her same nasty congestion again today...it got progressively worse throughout the day...you can now hear her breathing throughout the whole house. It is so pitiful, poor baby! I have been really watching her and her sisters closely because Elise brought home a note from Mother's Day Out last week that someone in her class was diagnosed with RSV. Lydia and Elise both have had runny noses since yesterday. Audrey just woke up a little while ago sounding congested. I'd assumed that Elise's was just her allergies, but I'm not sure. I pray that none of them get the virus. I'd like for them to be healthy for Christmas so that they can enjoy it.
Feeding has gone fairly well today...though the congestion has impacted it. She has some episodes of gagging and spitting up, seemingly due to the sinus drip. I feel so bad for her.
I have lately been getting more and more excited about Elise's speech. I'm not sure that she really sounds any better...I'm just having an easier time figuring out what she's saying. I was so excited (and she was too) tonight to finally figure out a word that she's been saying lately...she sort of grunts and says "au." Tonight she was trying to pull the top off of a marker when she said it. I finally realized she was saying "hard"...like it was too hard for her to do it. It is so funny that she picked up that little grunt that we usually do when we try to do something that is too hard. She has also been doing a lot of repeating (which also helps me to understand what she's saying)...she'll say something, wait for a response, and then say it again...and again, and again. Suzanne says it is good practice for her to repeat things. She has also been trying to put two words together...though not always with words. She'll usually shake her head while saying something...which means no/not/opposite of the word she is saying. Tonight, Grandma was here making a snowman craft with the girls with Ivory Snow...Elise has some sensory issues with texture, so she didn't want anything to do with touching that messy sticky stuff. She kept pointing to the snowman, shaking her head, and saying "touch." which of course meant that she didn't want to touch it. (And yes Suzanne, she said the word touch very clearly!! Exciting!) The /t/ sound has been the focus for a while now...she is starting to be able to vocalize it.
We've also lately been dealing with some behavior issues with Audrey. It is pretty clear that it is from jealousy because of a lack of attention. Since Lydia and Elise need so much, they do seem to get most of the attention at our house. Also, since Elise is starting to do and say much more lately, I notice that we are always watching her closely to see what she's doing and getting very excited about her accomplishments. Audrey has not lashed out at Elise, but she is throwing temper tantrums in an attempt to get attention. We are trying to address those issues while also attempting some preventive measures by spending more quality time with her. Since time is not in real abundance at our house these days, it has been challenging...though I guess that is the way parenting is and should be. We'll just keeping doing the best we can to make all of our girls as happy and healthy as we can.
Please pray that our girls get healthy and feel better soon.
Thursday, December 20, 2007
The Latest...
I'm back...sorry it's been so long...busy, busy, busy!!!
Lydia's feeding has of course run into an obstacle, again! It seems to be an unending cycle...everytime I think it is solved, the reflux strikes again. I am starting to understand the cycle...I guess I'll expect it next time. (It took me long enough!) Once her little body gets accustomed to the "perfect mix," the reflux starts again...so I try to thicken the formula...then she has trouble sucking it from the nipple...and so on and so on. I've also noticed that when she starts to hurt from the reflux, she stops eating as well...she'll sometimes not suck well at all...she'll sometimes suck the milk and not swallow, lets it flow out of her mouth. She's just trying to avoid pain...which none of us can blame her. She doesn't know that she has to eat to live or that she has to gain weight for her body, and most importantly her brain, to grow. She just knows it hurts, and that's not good. Well anyway...here's my new temporary cure: I added an additional 1/8 tsp of formula powder per oz of the previous mixture of ready-to-feed formula and oatmeal. Started that tonight...so far...last two feedings went fairly well. Keep her in your prayers please so that she continues to eat well.
We went to the dr today and she weighed 11 lbs. Sounds great...she's still gaining, but the gain has slowed down...5 1/2 oz in 2 weeks, quite a dive from 11 oz in 5 days last weigh-in. Hopefully, she'll put on some weight with this new trick. Today's appt was to discuss possible seizures. About 2 weeks ago, Martin and I were sitting on the couch...my legs were propped up with Lydia lying on them. About 4-5 times (every 2 minutes or so), she would throw her hands up with a fearful look in her eye and tremble for a couple of seconds. I talked with Susan about it the next morning and she thought it was probably a startle reflex...if she is startled by a loud noise or not being supported well. But, she also thought that if we noticed it to happen again with no apparent cause, we should call the dr. Last night, she was lying on a pillow on the floor and she had the same kind of episode. It was just after she ate... and I'm starting to think now that it may have been related to the reflux....a sudden pain that startles her, because I noticed that she swallowed a few times after it. What stumps me is that she doesn't cry when she does it...it seems to me that if the pain was enough to startle her that much, she would also cry. I thought it was worth checking out. I called Dr Wood's office today and he wanted her to be seen. We saw Dr. Ronnie this afternoon, and he ordered an EEG to determine if it is actually seizures or not. He seems to think that it is probably just a startle reflex, but the test should show for sure. He said that he knew we've been through a lot with her, so it is probably best to check it out. They are trying to get her squeezed in somewhere, so they'll call me back about scheduling an appt.
The thyroid medication has been a bit of a challenge. I have to crush a little pill and mix it with water to give to her. Imagine...she has reflux on her anti-reflux formula mixed with oatmeal, what do you think she does with something as thin as water?? Right! A nightmare the first few times. I am now putting it in a bottle nipple and for some reason (maybe because it is coming out slower...and she has control) she has done better than with the dropper.
Lydia and Jordyn (Tiffany's daughter) were christened together last Sunday. It was a wonderful, beautiful day filled with fun! Martin and I are very excited to be Jordyn's godparents. It also made for a very interesting baptism....transferring babies from arm to arm throughout the ceremony...it was a treat! We are very thankful that Aunt Jo and Uncle Jim were able to join us from California. They also got to make it to see the Broncos play (a big win over Brusly-my home turf...though I am now a full-fledged Bronco fan...:) We are also thankful for the delicious gumbo that Grandma made along with Papa's signature potatoe salad and Granny's delicious bread! Thanks Granny for setting us up in your clubhouse.
I finished buying my last Christmas gift tonight! Yeah!! Martin also started and finished his shopping today....how jealous am I about that?? ...though his list is just a wee bit shorter than mine. I have had a ball shopping this year though! Can't wait for Christmas! We'll have Christmas with the Comeaux's on Christmas Eve and then a Christmas Day debut at our house for Christmas with the Poche's. I hope you all have a very merry Christmas too!!! I'll try to update again before then...
Lydia's feeding has of course run into an obstacle, again! It seems to be an unending cycle...everytime I think it is solved, the reflux strikes again. I am starting to understand the cycle...I guess I'll expect it next time. (It took me long enough!) Once her little body gets accustomed to the "perfect mix," the reflux starts again...so I try to thicken the formula...then she has trouble sucking it from the nipple...and so on and so on. I've also noticed that when she starts to hurt from the reflux, she stops eating as well...she'll sometimes not suck well at all...she'll sometimes suck the milk and not swallow, lets it flow out of her mouth. She's just trying to avoid pain...which none of us can blame her. She doesn't know that she has to eat to live or that she has to gain weight for her body, and most importantly her brain, to grow. She just knows it hurts, and that's not good. Well anyway...here's my new temporary cure: I added an additional 1/8 tsp of formula powder per oz of the previous mixture of ready-to-feed formula and oatmeal. Started that tonight...so far...last two feedings went fairly well. Keep her in your prayers please so that she continues to eat well.
We went to the dr today and she weighed 11 lbs. Sounds great...she's still gaining, but the gain has slowed down...5 1/2 oz in 2 weeks, quite a dive from 11 oz in 5 days last weigh-in. Hopefully, she'll put on some weight with this new trick. Today's appt was to discuss possible seizures. About 2 weeks ago, Martin and I were sitting on the couch...my legs were propped up with Lydia lying on them. About 4-5 times (every 2 minutes or so), she would throw her hands up with a fearful look in her eye and tremble for a couple of seconds. I talked with Susan about it the next morning and she thought it was probably a startle reflex...if she is startled by a loud noise or not being supported well. But, she also thought that if we noticed it to happen again with no apparent cause, we should call the dr. Last night, she was lying on a pillow on the floor and she had the same kind of episode. It was just after she ate... and I'm starting to think now that it may have been related to the reflux....a sudden pain that startles her, because I noticed that she swallowed a few times after it. What stumps me is that she doesn't cry when she does it...it seems to me that if the pain was enough to startle her that much, she would also cry. I thought it was worth checking out. I called Dr Wood's office today and he wanted her to be seen. We saw Dr. Ronnie this afternoon, and he ordered an EEG to determine if it is actually seizures or not. He seems to think that it is probably just a startle reflex, but the test should show for sure. He said that he knew we've been through a lot with her, so it is probably best to check it out. They are trying to get her squeezed in somewhere, so they'll call me back about scheduling an appt.
The thyroid medication has been a bit of a challenge. I have to crush a little pill and mix it with water to give to her. Imagine...she has reflux on her anti-reflux formula mixed with oatmeal, what do you think she does with something as thin as water?? Right! A nightmare the first few times. I am now putting it in a bottle nipple and for some reason (maybe because it is coming out slower...and she has control) she has done better than with the dropper.
Lydia and Jordyn (Tiffany's daughter) were christened together last Sunday. It was a wonderful, beautiful day filled with fun! Martin and I are very excited to be Jordyn's godparents. It also made for a very interesting baptism....transferring babies from arm to arm throughout the ceremony...it was a treat! We are very thankful that Aunt Jo and Uncle Jim were able to join us from California. They also got to make it to see the Broncos play (a big win over Brusly-my home turf...though I am now a full-fledged Bronco fan...:) We are also thankful for the delicious gumbo that Grandma made along with Papa's signature potatoe salad and Granny's delicious bread! Thanks Granny for setting us up in your clubhouse.
I finished buying my last Christmas gift tonight! Yeah!! Martin also started and finished his shopping today....how jealous am I about that?? ...though his list is just a wee bit shorter than mine. I have had a ball shopping this year though! Can't wait for Christmas! We'll have Christmas with the Comeaux's on Christmas Eve and then a Christmas Day debut at our house for Christmas with the Poche's. I hope you all have a very merry Christmas too!!! I'll try to update again before then...
Friday, December 14, 2007
More News
Still feeding well...still sleeping all night (knock on wood) Yeah!
Opthamologist appt today:
The structure of her eyes look fine. The doctor considered her to be a little delayed as far as fixating and tracking...but, she said that babies normally develop that skill at about 2-3 months, so that only puts her about 2 weeks behind as of now. She wants to see her again in about 6 weeks to recheck. If there is any delay, it would be neurologic since her eyes look fine.
New call from Dr. Wood:
The thyroid test was abnormal. In the hospital, Lydia's thyroid test was a touch elevated to threaten hyperthyroidism. Now, her level was fine...but, a different test showed that her body is working harder to produce a hormone to level it out, so she has to begin taking a thyroid hormone pill once a day to prevent hypothyroidism. It is all a little confusing to me. I asked if it could be genetic, and he said it was possible....Tiffany and Ms. Hilda both have issues with thyroid (Martin's sister and mom). I'm sure they could shed more light on what all of this means...Tiff and Ms Hilda-if you can, you can comment on this post to educate us all. Dr. Wood said that he sees this a lot and some babies only have to take the hormone for about 3 months. Because he sees it a lot, he doesn't think this is really related to the other problems we are seeing in her. He wants us to see the pediatric endocrinologist (sp?) Dr. Lutfallah at the Lake.
Opthamologist appt today:
The structure of her eyes look fine. The doctor considered her to be a little delayed as far as fixating and tracking...but, she said that babies normally develop that skill at about 2-3 months, so that only puts her about 2 weeks behind as of now. She wants to see her again in about 6 weeks to recheck. If there is any delay, it would be neurologic since her eyes look fine.
New call from Dr. Wood:
The thyroid test was abnormal. In the hospital, Lydia's thyroid test was a touch elevated to threaten hyperthyroidism. Now, her level was fine...but, a different test showed that her body is working harder to produce a hormone to level it out, so she has to begin taking a thyroid hormone pill once a day to prevent hypothyroidism. It is all a little confusing to me. I asked if it could be genetic, and he said it was possible....Tiffany and Ms. Hilda both have issues with thyroid (Martin's sister and mom). I'm sure they could shed more light on what all of this means...Tiff and Ms Hilda-if you can, you can comment on this post to educate us all. Dr. Wood said that he sees this a lot and some babies only have to take the hormone for about 3 months. Because he sees it a lot, he doesn't think this is really related to the other problems we are seeing in her. He wants us to see the pediatric endocrinologist (sp?) Dr. Lutfallah at the Lake.
Wednesday, December 12, 2007
Lots of News!
Still eating well...since the hole in the nipple since last Thursday night.
Weighed in yesterday...11 oz gain in 5 days!!! Hip! Hip! Hooray! She now weighs 10 lbs. 10.5 oz. Our little heavy weight!! :) She has been sleeping all night since Thursday too. Today, I had to wake her up at ten minutes after 8!!! She was a little piglet...eating about 5- 6 oz at every feeding. Please pray that she keeps all of this up. She even withstood her rowdy sisters playing with her on the floor this evening. She has been great!!!
She had to repeat another blood test while at the dr yesterday. She needed to repeat a thyroid test that was a little elevated when she was in the hospital...still no results from that. It was a terrible experience...2 vein sticks with no luck...2 heel sticks to squeeze out 4 containers of blood. As horrible as it was, we both forgot all about it when she got on the scale. :) As always, the lab techs at the clinic were so kind and patient with us. I am thankful for their care.
PT appt Monday-
Susan was excited to see some improvement from last week. Her neck stiffness has gotten a little better, she was starting to hit some of the toys hanging on her car seat...everything was just a little better, but better at all is good, especially in just a week. She suggested some shiny toys...put jingle bells in a stainless steel bowl....also some cat balls with bells in the middle...hah! :) Susan will be out for 3 weeks with a hysterectomy. Lydia will see Terry, an OT at NTS, while Susan is out.
Susan also watched Elise run (and Audrey....it was wild with all three of them there:) She agreed that she twists at the waist when she runs. She noticed that she does not twist her shoulders while she runs, like most people. She suggested to help her strengthen her shoulders by having her practice reaching up for things.
Opthamologist appt- Friday...I'll try to update after that.
P.S. I am laughing out loud right now because as I type, Lydia is sitting on my lap facing the computer. She keeps kicking the keyboard drawer back in every time I get going. It is hilarious!
Weighed in yesterday...11 oz gain in 5 days!!! Hip! Hip! Hooray! She now weighs 10 lbs. 10.5 oz. Our little heavy weight!! :) She has been sleeping all night since Thursday too. Today, I had to wake her up at ten minutes after 8!!! She was a little piglet...eating about 5- 6 oz at every feeding. Please pray that she keeps all of this up. She even withstood her rowdy sisters playing with her on the floor this evening. She has been great!!!
She had to repeat another blood test while at the dr yesterday. She needed to repeat a thyroid test that was a little elevated when she was in the hospital...still no results from that. It was a terrible experience...2 vein sticks with no luck...2 heel sticks to squeeze out 4 containers of blood. As horrible as it was, we both forgot all about it when she got on the scale. :) As always, the lab techs at the clinic were so kind and patient with us. I am thankful for their care.
PT appt Monday-
Susan was excited to see some improvement from last week. Her neck stiffness has gotten a little better, she was starting to hit some of the toys hanging on her car seat...everything was just a little better, but better at all is good, especially in just a week. She suggested some shiny toys...put jingle bells in a stainless steel bowl....also some cat balls with bells in the middle...hah! :) Susan will be out for 3 weeks with a hysterectomy. Lydia will see Terry, an OT at NTS, while Susan is out.
Susan also watched Elise run (and Audrey....it was wild with all three of them there:) She agreed that she twists at the waist when she runs. She noticed that she does not twist her shoulders while she runs, like most people. She suggested to help her strengthen her shoulders by having her practice reaching up for things.
Opthamologist appt- Friday...I'll try to update after that.
P.S. I am laughing out loud right now because as I type, Lydia is sitting on my lap facing the computer. She keeps kicking the keyboard drawer back in every time I get going. It is hilarious!
Sunday, December 9, 2007
Wow!
Good news to report...this baby's momma decided we would do all that we had to do to fill her belly...and, fill her belly-she has done!! She has taken 4-6 oz. (mostly 5 or 6) at every feeding for the past couple of days (after cutting a hole in the nipples...as of now, we have 2 working nipples that we keep washing between feedings.) She seems to be a different baby...imagine how hungry she was all the time if she is taking this much now! And how about this: She slept from 10:30 last night until 8:30 this morning...what a treat for mom! I can't wait to find out her weight next Tuesday. I am wishing for big numbers!
Friday, December 7, 2007
Today's Sucess
Yes...today's feedings were successful with our new little nipple trick. She drank at least 4 oz (sometimes 5 or 6) at every feeding....every 3 hours and finished it in less than 30 minutes each time. She cried a little at her late afternoon feeding. I hadn't thought of this, but my mom pointed out that it is the last feeding before she takes her Nexium. Perhaps, it is not strong enough in her system at that time. Who knows? I called Dr. Wood today to let him know about her weight yesterday. His nurse called back and said that he wants her to weigh again in 5 days, so we'll go back next Tuesday. I pray that she keeps this up.
Thursday, December 6, 2007
Trials and Tribulations
We went to see Teresa-OT this morning. We talked about feeding difficulties and tried several different nipples. Lydia seemed to do pretty well with the orthodontic nipple, so I took a couple with me. Of course, when I tried it later...not much luck. Lydia has really not been putting down a whole lot lately, so I took her to be weighed this afternoon. Not good news...she gained only 2 oz in the last 10 days. Since she just started having feeding difficulties within the last several days, I would venture to say that she probably had gained some weight and then lost it. Needless to say, I felt very stressed about this situation. I came home absolutely determined to beef her up. I just keep thinking about what every doctor and therapist keeps telling me...weight gain is critical for brain growth. I decided to try cutting nipples again. I just feel desperate. This time, I cut a little hole in the Y cut nipples. It does not gush out as fast as it did when I cut the lines longer last time. So far, so good! She ate 4 oz of formula with 1/4 tsp oatmeal per oz in 20 minutes!! Not sure if cutting the nipple was right or wrong...but, I figure I'll worry about working more on her suck pattern later...right now, she needs to get the food in her tummy. (Teresa....let me know how you feel about this.)
Can't remember if I updated about all of the test results yet...
Chromosome study was normal.
Lactic acid level went down.
Can't remember if I updated about all of the test results yet...
Chromosome study was normal.
Lactic acid level went down.
Wednesday, December 5, 2007
We're Back
Sorry it's been a few days since I've updated...life has been VERY busy. I've been spending most of my computer time doing work...I've also been trying to keep up with Christmas, though it is coming faster than I can get ready. Thanks to Grandma and Paw-Paw, we have a few decorations up, and I've done a little shopping.
It seems like so much has happened lately. Lydia...my poor Lydia...eating not so well again. I tried to increase the oatmeal to decrease the reflux....she couldn't get it from the nipple. I'm trying all sorts of combinations to get this kink worked out right now because she has not been taking as much formula as she was...only 2-3 oz per most feedings. She did take 4 oz last night, but she also only took 1 oz at a feeding this morning. We will keep working on her! I want her to feel good and eat well again...please pray for that. Dr's and therapists are all concerned that she needs to keep gaining weight because it is critical for brain growth. I wanted to take her to get weighed today after my dentist appt, but she and Elise both fell asleep in the car and I didn't want to disturb them. I'll try to make it there within the next few days to make sure that she is still gaining weight. Thanks a bunch to Granny for keeping Elise and Lydia company while I had my dental appt this morning!
Appointment with Susan-PT on Monday:
Absolutely amazing... it is unbelievable how much Sue-Sue can tell from just looking at and holding a baby. I'll try to remember everything she told me, but as I told her, my brain is having trouble holding onto all of the information lately....suggestions for Lydia from PT, OT, Speech therapists, dr's, etc....suggestions for Elise's speech therapy. I try to incorporate it all, but I realize I fall far shorter than I would like. Here are some things she noticed about Lydia:
She shows a huge preference for turning her head to the right...her daddy says he notices it because she's always "batting left-handed." She does not have the strength to hold her head up for long periods of time...though she is trying. She does actually see and fixate on things, she just is slow to track when they move. Susan thinks that it could be that she has trouble moving her head to the left. She actually sometimes moves only her eyes to follow an object, which Susan says is a 5-month-old skill. Lydia realizes that she can't get her head to move like she wants it to, so she has compensated by moving only her eyes when she really wants to see something. When she doesn't really want to see it (like her momma's face :) she just doesn't follow at all. Susan also noticed that while on her back, Lydia moves her feet a lot...she holds them high in the air sometimes, which is actually another 5-month skill. She doesn't really use her hands like she should at this age. She also noticed that her feet have a little arch...babies are not supposed to have arches in their feet until they are about 2 years old. When you brush the bottom of her feet, her big toe comes up (Dr. Hollman also noticed this and said she didn't like it, but didn't really tell me why.). Susan said it tells her that Lydia's nervous system is on overload (which also causes the arch). This is also what Dr. Superneau eluded to... a possible defect of her nervous system...causes her to cry a lot....makes her feel tense and jittery all the time. Susan said that everything we do with her should be gentle and slow...which makes a lot of sense: she hates when Audrey and Elise get too close real fast and shake her up too much. I was really excited about this: she suggested a toy that she thought would be perfect...and it was already on Santa's list. She also said that she already signed Lydia and me up for an infant massage class that she will be teaching on Saturday mornings starting in January. I think that will be great! Here is the homework she wrote down for us to do (some things related to some suggestions from Teresa -OT)
1- hold her over our legs with her belly between our legs...use gravity to move the middle of her body down so that her head is a little elevated...hold a hand under her chin.
2- practice visual tracking...hold toy 6-8 inches from face (that is how far she can see: her arm's length away) and move slowly a little bit.
3- move her legs in bicycle motion at each diaper change
4- use a donut shape to rest her head in (she suggested a tube sock filled with a towel tied in a circle)...she said that the boppy is too big for her right now.
5- hold her chin to under her jaw and turn to left very gently
6- cross my right leg over my left leg and hold her in the bend of my knee...it is a good supported position for her and it encourages her to turn her head to the left to see me.
7- use black/white/red toys...having trouble finding many of those...they are not as popular as they once were.
8- encourage her to grasp light-weight rattles
Susan said that she felt that Elise and Lydia's conditions were not at all related. None of their symptoms are the same. When you pick up Lydia, her body sort of tries to curl up...whereas Elise was so loosey-goosey, all of her body was so relaxed. In fact, I told her that Elise still doesn't have an arch in her foot, and she said that she never will. It's just part of the low tone. She thinks she may need to re-evaluate Elise again soon just to give us some more tips about things to do with her. She said she may need some type of arch supports or something. I also want her to see her anyway...Elise is trying to start running some, and she twists a lot at the waist when she runs. It is the cutest thing you've ever seen, but I don't think it is exactly the correct form. Granny likes to tell this story...when Lydia was in the hospital, she was walking around with Elise, and a lady just burst out laughing when she saw her...she said, "Look at that girl twist. It took me half my life to get a twist like that."
Elise's speech has been good lately. I really feel like we are communicating more. I feel like I am learning more of her words better so that I can understand what she is telling me. Recently, I had felt like she was doing a lot of groping for sounds without really completing any one sound to communicate, but that is much better again. Our latest fun is that she'll say what Santa says (when she's in the mood)...Ho, Ho, Ho.
Audrey is doing well too....learning more and more... and teaching all of her baby dolls. One of her favorite things these days is rhyming words. She makes up rhymes all of the time. Her daddy and I can be sure that she has never heard any foul language because she is so proud of herself for making all of her silly rhymes...we can tell that she has no idea when she says words that she shouldn't be saying....I'll leave that to your imagination. She also has been trying to sound out and write words lately. We were hanging out at Papa's the other day, and this really impressed me. She wrote this word: Mule...and proudly said, "Look, Mom...I wrote Emily!" Not even close, obviously, but...the teacher in me saw that as very impressive inventive spelling for a 3-yr old.
Time to wake Lydia for a feeding...she has portraits scheduled this afternoon. Keep your fingers crossed that she is in good spirits for them. :)
It seems like so much has happened lately. Lydia...my poor Lydia...eating not so well again. I tried to increase the oatmeal to decrease the reflux....she couldn't get it from the nipple. I'm trying all sorts of combinations to get this kink worked out right now because she has not been taking as much formula as she was...only 2-3 oz per most feedings. She did take 4 oz last night, but she also only took 1 oz at a feeding this morning. We will keep working on her! I want her to feel good and eat well again...please pray for that. Dr's and therapists are all concerned that she needs to keep gaining weight because it is critical for brain growth. I wanted to take her to get weighed today after my dentist appt, but she and Elise both fell asleep in the car and I didn't want to disturb them. I'll try to make it there within the next few days to make sure that she is still gaining weight. Thanks a bunch to Granny for keeping Elise and Lydia company while I had my dental appt this morning!
Appointment with Susan-PT on Monday:
Absolutely amazing... it is unbelievable how much Sue-Sue can tell from just looking at and holding a baby. I'll try to remember everything she told me, but as I told her, my brain is having trouble holding onto all of the information lately....suggestions for Lydia from PT, OT, Speech therapists, dr's, etc....suggestions for Elise's speech therapy. I try to incorporate it all, but I realize I fall far shorter than I would like. Here are some things she noticed about Lydia:
She shows a huge preference for turning her head to the right...her daddy says he notices it because she's always "batting left-handed." She does not have the strength to hold her head up for long periods of time...though she is trying. She does actually see and fixate on things, she just is slow to track when they move. Susan thinks that it could be that she has trouble moving her head to the left. She actually sometimes moves only her eyes to follow an object, which Susan says is a 5-month-old skill. Lydia realizes that she can't get her head to move like she wants it to, so she has compensated by moving only her eyes when she really wants to see something. When she doesn't really want to see it (like her momma's face :) she just doesn't follow at all. Susan also noticed that while on her back, Lydia moves her feet a lot...she holds them high in the air sometimes, which is actually another 5-month skill. She doesn't really use her hands like she should at this age. She also noticed that her feet have a little arch...babies are not supposed to have arches in their feet until they are about 2 years old. When you brush the bottom of her feet, her big toe comes up (Dr. Hollman also noticed this and said she didn't like it, but didn't really tell me why.). Susan said it tells her that Lydia's nervous system is on overload (which also causes the arch). This is also what Dr. Superneau eluded to... a possible defect of her nervous system...causes her to cry a lot....makes her feel tense and jittery all the time. Susan said that everything we do with her should be gentle and slow...which makes a lot of sense: she hates when Audrey and Elise get too close real fast and shake her up too much. I was really excited about this: she suggested a toy that she thought would be perfect...and it was already on Santa's list. She also said that she already signed Lydia and me up for an infant massage class that she will be teaching on Saturday mornings starting in January. I think that will be great! Here is the homework she wrote down for us to do (some things related to some suggestions from Teresa -OT)
1- hold her over our legs with her belly between our legs...use gravity to move the middle of her body down so that her head is a little elevated...hold a hand under her chin.
2- practice visual tracking...hold toy 6-8 inches from face (that is how far she can see: her arm's length away) and move slowly a little bit.
3- move her legs in bicycle motion at each diaper change
4- use a donut shape to rest her head in (she suggested a tube sock filled with a towel tied in a circle)...she said that the boppy is too big for her right now.
5- hold her chin to under her jaw and turn to left very gently
6- cross my right leg over my left leg and hold her in the bend of my knee...it is a good supported position for her and it encourages her to turn her head to the left to see me.
7- use black/white/red toys...having trouble finding many of those...they are not as popular as they once were.
8- encourage her to grasp light-weight rattles
Susan said that she felt that Elise and Lydia's conditions were not at all related. None of their symptoms are the same. When you pick up Lydia, her body sort of tries to curl up...whereas Elise was so loosey-goosey, all of her body was so relaxed. In fact, I told her that Elise still doesn't have an arch in her foot, and she said that she never will. It's just part of the low tone. She thinks she may need to re-evaluate Elise again soon just to give us some more tips about things to do with her. She said she may need some type of arch supports or something. I also want her to see her anyway...Elise is trying to start running some, and she twists a lot at the waist when she runs. It is the cutest thing you've ever seen, but I don't think it is exactly the correct form. Granny likes to tell this story...when Lydia was in the hospital, she was walking around with Elise, and a lady just burst out laughing when she saw her...she said, "Look at that girl twist. It took me half my life to get a twist like that."
Elise's speech has been good lately. I really feel like we are communicating more. I feel like I am learning more of her words better so that I can understand what she is telling me. Recently, I had felt like she was doing a lot of groping for sounds without really completing any one sound to communicate, but that is much better again. Our latest fun is that she'll say what Santa says (when she's in the mood)...Ho, Ho, Ho.
Audrey is doing well too....learning more and more... and teaching all of her baby dolls. One of her favorite things these days is rhyming words. She makes up rhymes all of the time. Her daddy and I can be sure that she has never heard any foul language because she is so proud of herself for making all of her silly rhymes...we can tell that she has no idea when she says words that she shouldn't be saying....I'll leave that to your imagination. She also has been trying to sound out and write words lately. We were hanging out at Papa's the other day, and this really impressed me. She wrote this word: Mule...and proudly said, "Look, Mom...I wrote Emily!" Not even close, obviously, but...the teacher in me saw that as very impressive inventive spelling for a 3-yr old.
Time to wake Lydia for a feeding...she has portraits scheduled this afternoon. Keep your fingers crossed that she is in good spirits for them. :)
Saturday, December 1, 2007
Our Next Report
Dr. Wood left a message last night...he had the lab do a special test on the blood so that he could get the results quickly...there was no acidosis and her lactic acid level dropped from 6 to 3.8 ...not sure what all that means, but he said he feels 100% better...so, I do too.
I started adding a little more oatmeal to her bottles yesterday...it seems to have helped so far. As long as she is not having burping difficulties, she is not crying when she eats anymore. Last night she took a 4 oz bottle without burping at all, and she was very uncomfortable while trying to eat...but, I think that was the cause and not the reflux. I only added a small amount of oatmeal...she now gets 3/4 tsp per 4 oz bottle. So, she can still successfully suck it out of the nipple. Her suck seems to be getting better, though I still have to help her make a good seal by holding her cheeks and chin and to give her some resistance by pulling on the bottle when she sucks.
She is still doing some smiling and cooing...so much fun! Her favorite time seems to be 10 pm til midnight...not exactly the time I would plan. We'll work on that. :)
I started adding a little more oatmeal to her bottles yesterday...it seems to have helped so far. As long as she is not having burping difficulties, she is not crying when she eats anymore. Last night she took a 4 oz bottle without burping at all, and she was very uncomfortable while trying to eat...but, I think that was the cause and not the reflux. I only added a small amount of oatmeal...she now gets 3/4 tsp per 4 oz bottle. So, she can still successfully suck it out of the nipple. Her suck seems to be getting better, though I still have to help her make a good seal by holding her cheeks and chin and to give her some resistance by pulling on the bottle when she sucks.
She is still doing some smiling and cooing...so much fun! Her favorite time seems to be 10 pm til midnight...not exactly the time I would plan. We'll work on that. :)
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