- Posted using BlogPress from my iPhone
Wednesday, May 25, 2011
Saturday, May 21, 2011
Someone call the WAAAmbulance
This little girl is becoming a whiner. I probably condone it but I'm really not going to stop picking her up, walking her around, or trying to make her smile and laugh. She has been a little more whiny then usual the past few days and running a higher temp. Another tooth? I feel like I keep crying wolf when I say that but seems like those little things are just taking their sweet time to pop through. She's getting big though. We are definitely out of 6 month clothes and into 9 month clothes. Which means we need to go shopping! I love shopping for her, but she has to be around because when I buy and she's not they always end up too small.
She said MA!!!!! The other morning I had just got done changing her diaper and putting clothes on her (which you have to do when she's sitting up like a big girl otherwise you get scream-central) and she lifted her hands up higher (because they are naturally in the field goal position) and said MA in her little pouty face :) I was super excited! I'm going to say she knew what she was doing with that one. She also said DA the other day when we were skyping with daddy. He doesn't believe it but she really did! She has also pulled herself up from a reclined positon... all on her own. Pretty darn cool if you ask me! We're so proud of her!!!!
She is still tight-lipping food :( It's so frustrating because of how much food I ordered right before she started... Well one day when I went to the grocery I figured she's almost 9 months now, it's time for her to try some meat and I bought veggies and turkey. I gave it to her this afternoon and there was definitely no tight-lipping the spoon that time! She only ate about 1/2 the jar but I'll try some other food tonight and then give her the rest of the turkey tomorrow. Too bad all that food I ordered was mostly fruits and veggies, I'm really kicking myself for that. It was $80 worth!
Ellie got her growth hormone medicine in the mail. We go this week to see her endo and maybe she's going to start on that. This stuff is no joke and I've had pharmacy's calling me and drug company's calling all to provide me with info and supplies. But we're pretty well set to start, I'm not going to look forward to poking her with needles :( It's enough of a pain to crush up and give her thyroid medicine and the nasal tube for her other medicine. It's the nature of the beast I suppose.
Oh how I love Vista Print! I ordered business cards for this site from there and I also ordered invitations for her 1st birthday part (and Dusty and my wedding reception) for really cheap AND got a FREE $75 gift card for Google Ad Words. Which I just initiated our Ad Word account. Ad Words is going to link this site any time someone googles one of my key terms. I'm pretty excited! I'm hoping that this is going to reach more parents and family members who have or is dealing with SOD/ONH/DI or any of the other issues that come from them. Which reminds me.... Ellie and I will be attending the Magic Foundation's Convention in July!!!! I'm so excited because there I am hoping to meet other families who know what we're going through, even if they don't have SOD, rare diseases are enough to bond people, we understand that very few really understand. If you want to know more here's the link to the Convention. (the highlighted words are actually hyperlinks, click to follow to the page)
If you're a parent or educator for visionally impaired children email me!
Till next time... enjoy the videos :)
She said MA!!!!! The other morning I had just got done changing her diaper and putting clothes on her (which you have to do when she's sitting up like a big girl otherwise you get scream-central) and she lifted her hands up higher (because they are naturally in the field goal position) and said MA in her little pouty face :) I was super excited! I'm going to say she knew what she was doing with that one. She also said DA the other day when we were skyping with daddy. He doesn't believe it but she really did! She has also pulled herself up from a reclined positon... all on her own. Pretty darn cool if you ask me! We're so proud of her!!!!
She is still tight-lipping food :( It's so frustrating because of how much food I ordered right before she started... Well one day when I went to the grocery I figured she's almost 9 months now, it's time for her to try some meat and I bought veggies and turkey. I gave it to her this afternoon and there was definitely no tight-lipping the spoon that time! She only ate about 1/2 the jar but I'll try some other food tonight and then give her the rest of the turkey tomorrow. Too bad all that food I ordered was mostly fruits and veggies, I'm really kicking myself for that. It was $80 worth!
Ellie got her growth hormone medicine in the mail. We go this week to see her endo and maybe she's going to start on that. This stuff is no joke and I've had pharmacy's calling me and drug company's calling all to provide me with info and supplies. But we're pretty well set to start, I'm not going to look forward to poking her with needles :( It's enough of a pain to crush up and give her thyroid medicine and the nasal tube for her other medicine. It's the nature of the beast I suppose.
Oh how I love Vista Print! I ordered business cards for this site from there and I also ordered invitations for her 1st birthday part (and Dusty and my wedding reception) for really cheap AND got a FREE $75 gift card for Google Ad Words. Which I just initiated our Ad Word account. Ad Words is going to link this site any time someone googles one of my key terms. I'm pretty excited! I'm hoping that this is going to reach more parents and family members who have or is dealing with SOD/ONH/DI or any of the other issues that come from them. Which reminds me.... Ellie and I will be attending the Magic Foundation's Convention in July!!!! I'm so excited because there I am hoping to meet other families who know what we're going through, even if they don't have SOD, rare diseases are enough to bond people, we understand that very few really understand. If you want to know more here's the link to the Convention. (the highlighted words are actually hyperlinks, click to follow to the page)
If you're a parent or educator for visionally impaired children email me!
Till next time... enjoy the videos :)
Wednesday, May 18, 2011
I'm sure you've all been wondering...
The past week or two Ellie has been doing great! There was a week that she had a cold and cough that scared me enough to go to the ER but she was just fine and that same weekend a tooth broke the surface. Related? I'm not sure but I'm on alert if it happens again.
So she has a tooth and she likes to play and chop her gums. It's quite funny. She's also making her tummy time more effective, meaning she's kicking and lifting up and it's only a matter of time before she rolls over.
I have deactivated my Facebook account since I'm taking an online class. I'm just not disciplined enough to stay off of it while I'm doing, or attempting to do schoolwork. I'll get back on eventually but your Ellie 'fixes' will have to be satisfied here for now. Good news is I have an app on my phone to update from anywhere :)
Here are some photos
- Posted using BlogPress from my iPhone
So she has a tooth and she likes to play and chop her gums. It's quite funny. She's also making her tummy time more effective, meaning she's kicking and lifting up and it's only a matter of time before she rolls over.
I have deactivated my Facebook account since I'm taking an online class. I'm just not disciplined enough to stay off of it while I'm doing, or attempting to do schoolwork. I'll get back on eventually but your Ellie 'fixes' will have to be satisfied here for now. Good news is I have an app on my phone to update from anywhere :)
Here are some photos
- Posted using BlogPress from my iPhone
Tuesday, April 26, 2011
Cortisol Deficient
Well, Ellie doesn't have an ear infection however, we got medicine just in case. She also got some poop medicine (it's been a few too many days). Just thought I'd share something about her poop ;)
We went to Sacred Heart Hospital in Pensacola today and had the test ran. Ellie has an acute cortisol deficiency. When she was in the NICU they tested her and she was within normal limits, but now she is below normal limits (I don't know what the measurement is but the cutoff is 18 and she's at 16.9). The endo said she has hypo-pit (hypopituitarism), but I just looked it up and it said if the body was deficient in one or more hormones produced by the pituitary gland; with her DI that would mean that she already had hypo-pit. Semantics I guess.
Brief med history about cortisol: an important and helpful part of the body’s response to stress, it’s important that the body’s relaxation response to be activated so the body’s functions can return to normal following a stressful event. Other positive effects: A quick burst of energy for survival reasons. Heightened memory functions. A burst of increased immunity. Lower sensitivity to pain. Helps maintain homeostasis in the body. http://stress.about.com/od/stresshealth/a/cortisol.htm
Her body is still producing cortisol but it may not be enough to help her during high stress situations, which include but are not limited to fevers over 102, medical procedures that last over 15 minutes if they cause her pain, or any surgeries or hospitalizations. We only have to give her the medicine when she needs it, and we'll have a pill for the fevers and shots for the other stuff. There's actually a letter with instructions from the doctor telling us when we should use it. But just like her DI medicine it's "as needed" which just adds more responsibility and stress to Dusty and I to make sure she gets it when she needs it and only then. What happens if she doesn't get it when she needs it? Well she could have an adrenal crisis, and there's a laundry list of problems that could happen but in short, she could go into shock or a coma. Highly unlikely at this point because she is still producing some, so maybe she'd show signs of being faint, but still something to be aware of.
She's not unfamiliar with the medicine though. When she was in the PICU and intubated they gave her some to help her relax and heal faster. It helped, and her endo even made reference to it in the PICU and today.
What does it all mean? It means this is what we were told to expect... the unexpected. It is a little disheartening to hear that there's something else that she (and Dusty and I) have to deal with, but that's what SOD is. It's a bucket of possible problems and only time will tell what ones we have to deal with. I'm not the doctor and I'm just getting to scratch the surface of all the hormones the pituitary gland makes and if the hormone is produced in the anterior or posterior (front and back of the gland, I did learn something in A&P), but it looks like we're getting all of the pituitary hormones that she needs right now replaced. Once she hits puberty we'll have to see how those work. so it goes back to... the unexpected.
We went to Sacred Heart Hospital in Pensacola today and had the test ran. Ellie has an acute cortisol deficiency. When she was in the NICU they tested her and she was within normal limits, but now she is below normal limits (I don't know what the measurement is but the cutoff is 18 and she's at 16.9). The endo said she has hypo-pit (hypopituitarism), but I just looked it up and it said if the body was deficient in one or more hormones produced by the pituitary gland; with her DI that would mean that she already had hypo-pit. Semantics I guess.
Brief med history about cortisol: an important and helpful part of the body’s response to stress, it’s important that the body’s relaxation response to be activated so the body’s functions can return to normal following a stressful event. Other positive effects: A quick burst of energy for survival reasons. Heightened memory functions. A burst of increased immunity. Lower sensitivity to pain. Helps maintain homeostasis in the body. http://stress.about.com/od/stresshealth/a/cortisol.htm
Her body is still producing cortisol but it may not be enough to help her during high stress situations, which include but are not limited to fevers over 102, medical procedures that last over 15 minutes if they cause her pain, or any surgeries or hospitalizations. We only have to give her the medicine when she needs it, and we'll have a pill for the fevers and shots for the other stuff. There's actually a letter with instructions from the doctor telling us when we should use it. But just like her DI medicine it's "as needed" which just adds more responsibility and stress to Dusty and I to make sure she gets it when she needs it and only then. What happens if she doesn't get it when she needs it? Well she could have an adrenal crisis, and there's a laundry list of problems that could happen but in short, she could go into shock or a coma. Highly unlikely at this point because she is still producing some, so maybe she'd show signs of being faint, but still something to be aware of.
She's not unfamiliar with the medicine though. When she was in the PICU and intubated they gave her some to help her relax and heal faster. It helped, and her endo even made reference to it in the PICU and today.
What does it all mean? It means this is what we were told to expect... the unexpected. It is a little disheartening to hear that there's something else that she (and Dusty and I) have to deal with, but that's what SOD is. It's a bucket of possible problems and only time will tell what ones we have to deal with. I'm not the doctor and I'm just getting to scratch the surface of all the hormones the pituitary gland makes and if the hormone is produced in the anterior or posterior (front and back of the gland, I did learn something in A&P), but it looks like we're getting all of the pituitary hormones that she needs right now replaced. Once she hits puberty we'll have to see how those work. so it goes back to... the unexpected.
Sunday, April 24, 2011
Happy Easter
Ellie had an appointment with her endocrinologist last week. It went well, for the most part. She weighs almost 19lbs and is 2' 1" tall. That puts her weight in the 50th percentile and her height is right at or below the 10th percentile. Now here's the part where you need to keep up... SOD causes hormone deficiencies in the pituitary gland. There are eight major hormones. ADH is one, and that one controls the sodium levels in her body which is why we watch them and that causes her DI. Others include, but are not limited to, Cortisol (your ability to deal with stress, your fight or flight hormone), another is Thyroid (more to come on this), and IGF 1 (growth hormone, short stature syndrome, just being a very short person). These are the ones I'm going to talk about, but there are others that are important just not on our list at the moment.
Last week she got her thyroid and growth hormone (IGF 1) and sodium checked. Her sodium was perfect but the others are hovering just barely above normal range. If she develops a thyroid problem that could reek havoc on her brain development. SOD can cause mental retardation and there is research that links hypothyroidism to mental retardation (see link below to read more about this). Our endocrin has been very concerned and watching her thyroid since we left the NICU. Her cortisol levels haven't been checked since she was in the NICU so we need to make sure that's not a cause to the other low levels. Checking this hormone requires them to give her the medicine and see how her body reacts by taking scheduled blood draws. We got lucky and we go to Pensacola one day this week to have this test done, and we only have to wait until after lunch to find out the results. Ok, still keeping up?
If her cortisol is normal, pretty confident it will be, then we will start her on thyroid medicine. It's safer to have her on the high side of the hormone than the low. Meanwhile, doctor is submitting documents to the insurance company to see if they'll approve it, if not then she'll have to go through the testing and that takes 3 hours and 6 blood draws. It has to have insurance approval since once you start you have to take it, pretty much, for the rest of your life. I've heard that she'll be on the meds for the rest of her life but I've also heard that she can come off and I saw on a YouTube video that one person had to go back on once they came off. So there's no real definitive answer on this. Hopefully they'll go ahead and approve it, Tricare isn't that bad but the base clinic sucks. No offense Dr. K.Nation, you're good ;)
Last week she got her thyroid and growth hormone (IGF 1) and sodium checked. Her sodium was perfect but the others are hovering just barely above normal range. If she develops a thyroid problem that could reek havoc on her brain development. SOD can cause mental retardation and there is research that links hypothyroidism to mental retardation (see link below to read more about this). Our endocrin has been very concerned and watching her thyroid since we left the NICU. Her cortisol levels haven't been checked since she was in the NICU so we need to make sure that's not a cause to the other low levels. Checking this hormone requires them to give her the medicine and see how her body reacts by taking scheduled blood draws. We got lucky and we go to Pensacola one day this week to have this test done, and we only have to wait until after lunch to find out the results. Ok, still keeping up?
If her cortisol is normal, pretty confident it will be, then we will start her on thyroid medicine. It's safer to have her on the high side of the hormone than the low. Meanwhile, doctor is submitting documents to the insurance company to see if they'll approve it, if not then she'll have to go through the testing and that takes 3 hours and 6 blood draws. It has to have insurance approval since once you start you have to take it, pretty much, for the rest of your life. I've heard that she'll be on the meds for the rest of her life but I've also heard that she can come off and I saw on a YouTube video that one person had to go back on once they came off. So there's no real definitive answer on this. Hopefully they'll go ahead and approve it, Tricare isn't that bad but the base clinic sucks. No offense Dr. K.Nation, you're good ;)
As for her Easter, well she's been a cranky baby this weekend and has been running a low-grade fever and is refusing solid foods (her mouth snaps shut when the spoon goes to her mouth). She's still drinking but I'm not sure if it's just teething or she has a new ear infection. She only seems to be happy with her sippy cup in her mouth or sleeping. Below is a picture of her Easter outfit. We went to church but had to leave before the service because she started crying. So we came home and then later went over to Jade's momma's (Kim) house for an Easter egg hunt. Kim had ordered eggs that make noise and one that says, "I'm over here." They're super cute and Ellie really liked them. She giggled at them because they bark (it's a safe/cute bark, not a big dog bark). We came home and she refused more teething toy options and then went to sleep. Hopefully we'll get in to see the pediatrician tomorrow. Hope you all had a wonderful Easter and your week is wonderful. I'll try to update once we're done with Pensacola but it may have to wait until the weekend.
Monday, April 18, 2011
2 weeks later...
It's been a busy two weeks since the last post, but Ellie is doing great! She has started OT and has met with her early interventionist. They have both left some pretty awesome toys that she absolutely loves. One is a moracca that fits perfectly in her hands and the other is a little chick that makes chirping noises. She has been doing rasberry's but the other night she started making the wa-wa-wa noise. I'm terrible at explaining her noises but I'll attach the videos. Also, she is sitting on her own with minimal assistance. She topples but it's after a good minute or two. Now that she's sitting it makes it a little easier for her to reach out and grab toys. We're practicing that and rolling over. I must say, I'm so proud of her and how well she's doing. And not to mention her using a sippy cup. I started letting her play with it about a week ago, and since she's teething and biting down a lot it helped her realize that's how you get the liquid out. It's taken her a little bit, but she took 3 oz out of it yesterday and took 5 oz out of it today. I mean, she's not even 8 months old and her gestational age is a month behind and she's already picking up the sippy cup! I'm going to give her another week before I move her completely over to the sippy cup. And if you're thinking it's too early, well I don't want her to be 2 y/o and still on the bottle so the earlier the better and why not if she's picking it up and not making a mess.
I'm about a month behind on her vaccinations so she just got her 6 month shots on Wednesday and that was not a good experience. She gets her blood taken and it doesn't nearly compare to the cries and screams of shots. But anyway, she got fussy and wasn't as nearly as hungry as she normally is... and then the fever and crabbiness. She had a couple of days of fever, but she is over and back to 100%. It's so nice to have such a happy baby. Really, she is absolutely wonderful and loving.
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| At Aunt Stacey's sitting like a big girl. |
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| Wheeling around Target. She got to touch and explore a lot of new things. |
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| Playing with her toys and sitting so great! |
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| 1st time in her exersaucer playing with her plastic slinky |
Sunday, April 3, 2011
7 months old :)
Last Wednesday Ellie had her appt with PT, OT, and the DS (developmental specialist). The appt went well and we got an idea of how much later it usually takes a VI (visionally impared) child to develop. She's is doing good and on the right track. She's going to have appointments which each of the therapists once a week, luckily they'll come to the house and daycare. This way Christie gets experience on how to help her develop while she's with her and I get to participate without being out of work all the time.
The last post was Ellie being sick. She's doing much better now, but she's still on her antibiotics but she'll finish those later this week. Friday night Ellie made her first rasberry! She had been working on it for a while but she finally figured it out. It was really nice because we were skype'ing with Dusty so he got to see/hear too! She doesn't have it locked down but she likes trying. One thing PT pointed out was, when you pull her up by her arms she doesn't try to lift her head, it just stays back. So El and I have been working on that and she lifted her head a few times last night when we were practicing. She also is doing SUPER on sitting up on her own, she did it for about 10 seconds on her own. The poor baby doesn't use the bumbo anymore because her little chunky-chunk legs are too think for it.
Monday starts her first week of therapies. I'm super excited to see how she progresses. We have a lot of help now and we're so lucky because of it. Hopefully this week one of her teeth pops through!
The last post was Ellie being sick. She's doing much better now, but she's still on her antibiotics but she'll finish those later this week. Friday night Ellie made her first rasberry! She had been working on it for a while but she finally figured it out. It was really nice because we were skype'ing with Dusty so he got to see/hear too! She doesn't have it locked down but she likes trying. One thing PT pointed out was, when you pull her up by her arms she doesn't try to lift her head, it just stays back. So El and I have been working on that and she lifted her head a few times last night when we were practicing. She also is doing SUPER on sitting up on her own, she did it for about 10 seconds on her own. The poor baby doesn't use the bumbo anymore because her little chunky-chunk legs are too think for it.
Monday starts her first week of therapies. I'm super excited to see how she progresses. We have a lot of help now and we're so lucky because of it. Hopefully this week one of her teeth pops through!
I almost forgot that when I took Ellie to the clinic to get her follow-up appt that someone said "Oh, she's tracking things so well." Ummm... No, no she's not. She's blind, he responded "Are you sure because she's looking around." Let's get this out of the way now... Ellie can't see! She may have some light perception out of her right eye but we won't know how much until she can talk and tell us. Blind people can still move their eyes around. It's not like us sighted people when we pretend to be blind and close our eyes. That seriously made me laugh. Am I sure?
Then someone yesterday at a derby function told me what she was looking at while I was holding her. It's not the first thing I say to people but I felt the urge in this case and then the lady apologized to me. I politely said No reason to apologize. I should say sorry to you that you don't get the experience to raise a blind child and get the wonderful experiences that I do. She smiled and said you're right. :)
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