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.
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