With WHS over 90% of kids experience seizures, this has been the one thing that I have had the hardest time with. There are so many types of seizures, some fast and mild and some are long and hard. Since Noelle was born I have been carefully watching her every move, questioning twitches and hoping I wouldn't miss an "episode".
I have now seen a couple of neurologists, the first was very passive and told me not to worry about seizures unless it was a grand maul lasting longer than 2-3 minutes. As a mom this didn't sit well with me. If my child is having short mild episodes the longer I don't treat those the more likely the seizures could escelate into something much worse. I left the first appointment angry, disappointed, furious. This doctor acted like seizures were no big deal especially in a child with other obstacles and health issues.
On Friday we decided to take a trip to LA area to see another pediatric neurologist, she was awesome and made up for the terrible experience we had at the previous neurology appointment. She went over what to do, what to look for, non medical/natural treatment, how seizures occur and how they effect the brain and child. All these things were so important for us to hear and she answered all my questions and more!
We have no proof at this time of seizures, most WHS kids have fever induced seizures, so we hope to keep her fever free as long as possible and hope to not have to deal with seizures for a while if at all. If we suspect seizures and they are reoccurring then we will begin to medicate and do tests. We would be lucky if this was something we could avoid, so we will cross our fingers we can keep this precious little one seizure free!
Saturday, August 30, 2014
Thursday, August 28, 2014
Hearing Aids
We finally completed the test required to figure out Noelle's hearing loss. After 9 Hours of testing we are done! (for now anyway )I know we will have more test in the future. We learned that Noelle will need bone conduction hearing aids. Since she most likely has fluid on her ear drums which blocks sound from traveling to her ears, if they place an aid on her nerve behind her ear, it will amplify the sound and allow Noelle to hear everything around her.
The biggest downside to getting aids is having to pay for them. They cost $4000, and insurance doesn't cover any of the cost =( We are in the process of trying to find a way to fund them and hope to be approved by a grant. We will see what we can do.
We want to be able to provide Noelle with the best life possible and hope that aids will help her to be able to develop and grow to her maximum potential. Pray that we will find the funding we need to get these aids asap!
The biggest downside to getting aids is having to pay for them. They cost $4000, and insurance doesn't cover any of the cost =( We are in the process of trying to find a way to fund them and hope to be approved by a grant. We will see what we can do.
We want to be able to provide Noelle with the best life possible and hope that aids will help her to be able to develop and grow to her maximum potential. Pray that we will find the funding we need to get these aids asap!
Wednesday, August 20, 2014
Hearing test
As we have learned, many kids with cleft lip and cleft pallet have issues with their ears/hearing. After many failed tests while Noelle was in the NICU we have been going to appointments where they are testing her hearing abilities and discovering what the issue is.
Yesterday we went for a 3 hour hearing test again. We had to repeat this test from the test previously because she has to sleep the whole time they are doing the test.The first time we attempted these tests she was wide awake the whole time and would not sleep no matter how hard I tried. They told me to make sure she didn't sleep at all previous to her apportionment from 8 am- 2pm they wanted her to stay awake. How do they expect a new mom of 3 kids to keep their kid sleep deprived before their appointment. She is only 2.5 months old, she needs sleep! This was a challenge and really hard on me. She still doesn't sleep at night so I am surviving on no energy, caffeine is what gives me my artificial energy.
So yesterday I kept her awake, dropped the older two off at a friends house and prayed that we would have some success with testing. To my surprise Noelle fell asleep very quickly and stayed asleep for a good amount of time for the tests! We learned a lot from this appointment, although we still have more tests to do we at least know her level of hearing now.
Noelle's right ear has about 45% hearing loss and her left ear has about 60% hearing loss, so we are told that if we talk really loudly (70 decibels or louder) she should be able to hear us. With her hearing loss and water in her ears she won't clearly hear us, she will hear muffled words but at least she can hear something. This gives us hope that at some point she will be able to hear us with surgery and aids!
We will continue with tests next week and hope for more info with time. One thing we do know is that they do not make aids for kids her size so we are going to have to wait until she is bigger to get her fitted and hearing normally.
Yesterday we went for a 3 hour hearing test again. We had to repeat this test from the test previously because she has to sleep the whole time they are doing the test.The first time we attempted these tests she was wide awake the whole time and would not sleep no matter how hard I tried. They told me to make sure she didn't sleep at all previous to her apportionment from 8 am- 2pm they wanted her to stay awake. How do they expect a new mom of 3 kids to keep their kid sleep deprived before their appointment. She is only 2.5 months old, she needs sleep! This was a challenge and really hard on me. She still doesn't sleep at night so I am surviving on no energy, caffeine is what gives me my artificial energy.
So yesterday I kept her awake, dropped the older two off at a friends house and prayed that we would have some success with testing. To my surprise Noelle fell asleep very quickly and stayed asleep for a good amount of time for the tests! We learned a lot from this appointment, although we still have more tests to do we at least know her level of hearing now.
Noelle's right ear has about 45% hearing loss and her left ear has about 60% hearing loss, so we are told that if we talk really loudly (70 decibels or louder) she should be able to hear us. With her hearing loss and water in her ears she won't clearly hear us, she will hear muffled words but at least she can hear something. This gives us hope that at some point she will be able to hear us with surgery and aids!
We will continue with tests next week and hope for more info with time. One thing we do know is that they do not make aids for kids her size so we are going to have to wait until she is bigger to get her fitted and hearing normally.
Sunday, August 17, 2014
Post op Opthamology
This week we make our trek back up to CHLA for Noelle's post op. I was kind of dreading this appointment, one because of the drive and second, I wasn't sure the surgery had worked.
The drive on google maps shows a 50 mile trip. Not too bad, if you don't hit traffic. The traffic in LA SUCKS! For some reason no matter what time of day there is always traffic in LA. We lucked out and it only took us an hour and a half vs the 2 hours it took us the previous week when we drove.
When you are working with a well known doctor you should always expect wait times. LONG wait times, one reason I was dreading this appointment. We waited two hours past our appointment time before we saw the doc. Since one of my friends took the older two kids I got some good me time in with Noelle. The doc did have some good news for us. Noelle's eye pressures were within the normal range! After surgery she didn't sound convinced that the surgery would work, she still isn't sure the pressures will stay down but it's nice to know they are good for now!
We will go back in a couple of weeks for a recheck of her eyes and go from there. She will have many more surgeries on her eyes we just hope and pray the pressures will stay down so they don't have to do more treatments before the next surgery.
The drive on google maps shows a 50 mile trip. Not too bad, if you don't hit traffic. The traffic in LA SUCKS! For some reason no matter what time of day there is always traffic in LA. We lucked out and it only took us an hour and a half vs the 2 hours it took us the previous week when we drove.
When you are working with a well known doctor you should always expect wait times. LONG wait times, one reason I was dreading this appointment. We waited two hours past our appointment time before we saw the doc. Since one of my friends took the older two kids I got some good me time in with Noelle. The doc did have some good news for us. Noelle's eye pressures were within the normal range! After surgery she didn't sound convinced that the surgery would work, she still isn't sure the pressures will stay down but it's nice to know they are good for now!
We will go back in a couple of weeks for a recheck of her eyes and go from there. She will have many more surgeries on her eyes we just hope and pray the pressures will stay down so they don't have to do more treatments before the next surgery.
Friday, August 15, 2014
Tuesday, August 12, 2014
Friday, August 8, 2014
NICCU
Our unexpected NICCU stay quickly turned into a 2 day stay, totally not what we had planned on. We drove up to CHLA Wednesday anxious to get Noelle back home when we got there we were informed they would not be able to release her because her sodium levels were dangerously low.
I of course wasn't planning on this news and immediately called her doctors to try to get them to release her so we could get out of there. Soon after I started calling around her I got in touch with Noelle's amazing NICU doctor that helped with here when she was born. The doctor explained to me that she did need to be closely monitored and that the low sodium levels were likely to go back to normal after she peed off all the extra IV fluids. What most likely happened is she was over hydrated during surgery and it caused her sodium levels to drop so low that she was on seizure watch, I later found out with her levels as low as they were she could have died!
Now that we were on our second day of an unexpected stay we decided to find a place to stay so we wouldn't have to make the drive again and found a store to get the essentials we would need to hold us over until we could go home. We now know that any time we go to the hospital for any procedures we will go expecting to stay the night, then we can be pleasantly surprised if we don't.
The following morning Noelle's sodium levels returned back to their normal level and we were able to go home and get back to our kids! We are so thankful once again for my mom and her help while we went through all of this, she took care of the older two girls without complaining and spoiled them rotten =)
I of course wasn't planning on this news and immediately called her doctors to try to get them to release her so we could get out of there. Soon after I started calling around her I got in touch with Noelle's amazing NICU doctor that helped with here when she was born. The doctor explained to me that she did need to be closely monitored and that the low sodium levels were likely to go back to normal after she peed off all the extra IV fluids. What most likely happened is she was over hydrated during surgery and it caused her sodium levels to drop so low that she was on seizure watch, I later found out with her levels as low as they were she could have died!
Now that we were on our second day of an unexpected stay we decided to find a place to stay so we wouldn't have to make the drive again and found a store to get the essentials we would need to hold us over until we could go home. We now know that any time we go to the hospital for any procedures we will go expecting to stay the night, then we can be pleasantly surprised if we don't.
The following morning Noelle's sodium levels returned back to their normal level and we were able to go home and get back to our kids! We are so thankful once again for my mom and her help while we went through all of this, she took care of the older two girls without complaining and spoiled them rotten =)
Tuesday, August 5, 2014
Surgery results
The doctor said things went relatively well. They checked Noelle's pressures to ensure the need of "venting" in her eye for glaucoma. Her right eye (the bigger eye) has always had high pressure and was vented to help it drain. Her left eye had good pressure and did not need to be vented!
Doc also confirmed that she does indeed have cataracts, but with the coloboma and glaucoma it makes treating the cataracts very risky. She will not preform that surgery at this time. She feels that it is too risky and wouldn't take properly. So we will continue to be followed by our regular ophthalmologist and decide on treatment and procedure as time goes on. For now we will continue doing her eye drops and getting routine eye checks to make sure her pressure stays low.
Thankful for a good team of doctors and going to meet our new NICU staff now. Hope they are as good as our team before :)
Doc also confirmed that she does indeed have cataracts, but with the coloboma and glaucoma it makes treating the cataracts very risky. She will not preform that surgery at this time. She feels that it is too risky and wouldn't take properly. So we will continue to be followed by our regular ophthalmologist and decide on treatment and procedure as time goes on. For now we will continue doing her eye drops and getting routine eye checks to make sure her pressure stays low.
Thankful for a good team of doctors and going to meet our new NICU staff now. Hope they are as good as our team before :)
Ophthamology surgery.
As I sit here waiting for Noelle to be done with surgery I am anxious to know the results. Did she tolerate everything? Can she see better now? Do her eyes have a lower pressure?
These are questions even the doctors don't know. They never have answers for us before they do the procedures. We always go into each procedure with an open mind of it could be the "best" or "worst" scenario.
We are hopeful they will be successful. They have treated us well here, we know we are at a great hospital with knowledgeable doctors. Today as we met with anesthesiology we were informed that they were going to have Noelle stay the night for observation. This was something we were not planning on. Although it may be a bit of a inconvenience, I am glad they are taking the right steps to make sure she does well. They will be admitting her back into the NICU. Typically they won't re-admit a baby back into the NICU once they have left, but since Noelle is so small they want the best possible team available to her. We will be meeting her new NICU team shortly and meeting with her doctor shortly to discover the outcome. We will keep you all posted!
Saturday, August 2, 2014
CHLA
As I have briefly mentioned before, Noelle has been seen at CHLA for her eyes. She has glaucoma, coloboma and possible cataracts. Since glaucoma and cataracts are typically seen in older people there are very few doctors with experience in treating and operating on kids with these conditions.
Our wonderful Ophthalmologist that we have been seeing since Noelle was in the NICU has connected us up with a great Doctor at CHLA who has also seen a few other kids with Noelle's same syndrome. We feel she is the best fit for this procedure. We ask for your prayers this next week as she goes in for surgery on Tuesday. I am nervous, but know she will be in good hands with the best qualified doctor around.
She will most likely have a number of surgeries on her eyes as they try to get them working the best they can. We will keep you posted on her progress.
Our wonderful Ophthalmologist that we have been seeing since Noelle was in the NICU has connected us up with a great Doctor at CHLA who has also seen a few other kids with Noelle's same syndrome. We feel she is the best fit for this procedure. We ask for your prayers this next week as she goes in for surgery on Tuesday. I am nervous, but know she will be in good hands with the best qualified doctor around.
She will most likely have a number of surgeries on her eyes as they try to get them working the best they can. We will keep you posted on her progress.
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