We all like to be surprised to a certain extent, however the surprises for us this year have been more than we would have hoped for. I have many times thought about how many trials we have had to face this year. Trials I never would have wished on anyone to experience, trials I would have never expected. I have tried to face these trials and learn from each one, asking myself, "What is God trying to teach me?"
This past week has been full of more surprises than one would think possible, we received an unexpected bill in the mail with a huge balance, our washer and dryer broke, more and more appointments are piling up, I ended up in the hospital for a night with a horrible infection that left me wiped out for days, I could go on and on, but don't feel like bringing up all the negative, headaches we are dealing with right now. I just want a break from all the chaos!
However, as I prepared to make my second trip to the laundry mat for the week, a thought crossed my mind, I need to be more thankful. I am so thankful I do have a washer and dryer in my home (even if I am temporarily without one). I am thankful for my husband that works hard and has a great job that covers our bills, I am thankful I have medical care for my self and my child, life could be worse, I am thankful we have Noelle and her sweet spirit in our home, I just need to enjoy this phase of life.
We have been grasping and holding on tight to friends, family, and God during this roller coaster ride. We have learned that God is in control and he will never give us more than we can handle. Even when I feel I am at me breaking point, I guess he is just helping become stronger and learn to endure. Endure to the end.
I hope that this all will calm down. Soon.
Thursday, July 31, 2014
Saturday, July 26, 2014
Weight
"Is she gaining weight?"
"How much does she weigh?"
"How much did she weigh when she was born?"
"Where is she on the growth chart?"
"How much weight has she gained since we saw you last?"
These are questions I am asked daily by doctors, we are monitored so closely on weight for Noelle. We get at least 2 weigh ins a week. When we left the NICU she weighed 3 pounds 1 ounce (the same as her birth weight) now after being home for 4 weeks she weighs 3 pounds 10 ounces! Although her GI doc wants to see a more rapid weight gain, I am very happy with her progress.
We still continue to be busy with appointments. Every week I look at my calendar in hopes of having 1 day with out appointments, each week I am greeted with disappointment as that one day seems to fill up with an appointment... or two. Maybe, just maybe this week the appointments will slow down. One can hope. Right? =)
"How much does she weigh?"
"How much did she weigh when she was born?"
"Where is she on the growth chart?"
"How much weight has she gained since we saw you last?"
These are questions I am asked daily by doctors, we are monitored so closely on weight for Noelle. We get at least 2 weigh ins a week. When we left the NICU she weighed 3 pounds 1 ounce (the same as her birth weight) now after being home for 4 weeks she weighs 3 pounds 10 ounces! Although her GI doc wants to see a more rapid weight gain, I am very happy with her progress.
We still continue to be busy with appointments. Every week I look at my calendar in hopes of having 1 day with out appointments, each week I am greeted with disappointment as that one day seems to fill up with an appointment... or two. Maybe, just maybe this week the appointments will slow down. One can hope. Right? =)
Thursday, July 24, 2014
Audiology
Add another doctor to the list... Our network of doctors continues to grow. Just when I thought it couldn't grow any more. :)
Noelle had a number of hearing test while in the NICU and failed all of them. We have had a few others (all referred/failed) since then and met with an audiologist this week to discuss issues and a plan going forward.
While we met with the doctor she conducted several tests. We learned that Noelle most likely has fluid on her ears causing her to not be able to hear.
We learned that she most likely does not have nerve damage, so with aids she should be able to hear! We still have many tests to do. She is too small for some of the tests (the equipment isn't made to fit her small size) and she wouldn't sleep and cooperate for the other tests.
We go back in a month for more tests and hope that she will have grown more by then so we can continue treatment and get a better idea of what will happen with her hearing.
Noelle had a number of hearing test while in the NICU and failed all of them. We have had a few others (all referred/failed) since then and met with an audiologist this week to discuss issues and a plan going forward.
While we met with the doctor she conducted several tests. We learned that Noelle most likely has fluid on her ears causing her to not be able to hear.
We learned that she most likely does not have nerve damage, so with aids she should be able to hear! We still have many tests to do. She is too small for some of the tests (the equipment isn't made to fit her small size) and she wouldn't sleep and cooperate for the other tests.
We go back in a month for more tests and hope that she will have grown more by then so we can continue treatment and get a better idea of what will happen with her hearing.
Thursday, July 17, 2014
Blessed
I know I am so far behind on blogging, life is packed full of daily tasks and appointments and leaves no down time to catch up on here. I will try to allot sometime this weekend to getting everyone all up to date!
However, I do have some info we have shared that we have not updated to the blog yet. My sweet sister set up a fund to help us pay for Noelle's medical expenses. We have been so blessed with many donations and are so thankful for all the love and support. See her page here. ghttp://www.gofundme.com/b8ka2g
Feel free to share this site if you feel impressed to do so.
However, I do have some info we have shared that we have not updated to the blog yet. My sweet sister set up a fund to help us pay for Noelle's medical expenses. We have been so blessed with many donations and are so thankful for all the love and support. See her page here. ghttp://www.gofundme.com/b8ka2g
Feel free to share this site if you feel impressed to do so.
Monday, July 7, 2014
Doctors, PHDS, DOCS and DOCTORS!
I feel like I need to update everyone on the latest news. We have been busy, very BUSY, I feel like I say that in every post, it is just our life right now, alway something to do and somewhere to go. Since Noelle has been discharged (almost 2 weeks ago) we have seen several doctors. We have been to CHLA (Childrens Hospital LA) to see an ophthalmologist, and then around Orange county we have seen her pediatrician, nutrition, ophthalmologist, nephrologist, cardiology, gastroenterologist, general surgeon, Occupational therapist, Regional Center, and neurology and a few in home care specialists.
Right now, we are hoping to get our insurance to approve surgery for Noelle at CHLA for the first part of August. They will be checking the pressures in her eyes and possible "venting" she currently has glaucoma and coloboma, with possible cataracts. We hope that the doctors can continue to work together to allow Noelle the best vision she can have.
Nutrition is following Noelle's weight gain, we are currently fortifying (adding formula to breast milk) to give her additional calories to aid in more weight gain. Typically infants get 20 calories per ounce of breast milk or formula and Noelle is receiving 24 calories per ounce.
Her kidneys are currently still small and appear to be functioning at 40%. We trying to find a person who can get a blood draw on her to give us an updated count on things. On Monday we spent an hour and a half at the hospital and 4 nurses trying to find a vein they could draw from. after 3 unsuccessful pokes I called it quits and we left. Hopefully we can find someone by tomorrow who can get her blood drawn.
Cardiology is following us as Noelle has an ASD and PDA, both which are categorized as small but will follow to watch and make sure that the holes close. If they don't close they will have to do surgery to close the holes.
GI is working with us to follow her progress with her feeds (bottle and g-tube). She is still taking 10-15 mls by bottle and 18-23 by pump, and hope that over time we can get her eating more by bottle.
The General surgeon says that everything is healing well with her g-tube! We are looking at operating on her hernias when she is about 6 months old. There is no rush to operate unless she develops a hard bump on her abdominal area, which he doesn't foresee happening.
Occupational therapy is working with us on keep Noelle as mobile as possible. she does have a stiff neck on one side, she always turns her head to the right and doesn't like to turn to the left. At this time she does not have torticollis yet, so we are stretching her and working with her everyday to keep her from developing torticollis and to try to get her to use the other side more.
Regional Center has come to meet us once, they have to review our case before we can get any services. We are praying that Noelle will be able to get therapy through them. They send therapists to the house to work with her on physical, speech and occupational development. This means I wouldn't have to drag the kids all out to these appointments (this would be fabulous and help me so much)! Dragging 3 kids to appointments is a day long task!
With this syndrome comes many seizures. Seizures of all types. We have learned through the neurologist of things we need to look for and what steps to take if she does have a seizure. over 90% of WHS kids have seizures at some point in their life. We are hopeful that she maybe one of the few that don't but will find out with time if she will face this additional struggle.
I feel like this is the longest and mostboring informational post we have made. Hope it wasn't too long and boring for you all =) Now that I have this all done I can start posting more regularly again and not feel so behind! My goal for the week... Post more to the blog. Stay tuned!
Right now, we are hoping to get our insurance to approve surgery for Noelle at CHLA for the first part of August. They will be checking the pressures in her eyes and possible "venting" she currently has glaucoma and coloboma, with possible cataracts. We hope that the doctors can continue to work together to allow Noelle the best vision she can have.
Nutrition is following Noelle's weight gain, we are currently fortifying (adding formula to breast milk) to give her additional calories to aid in more weight gain. Typically infants get 20 calories per ounce of breast milk or formula and Noelle is receiving 24 calories per ounce.
Her kidneys are currently still small and appear to be functioning at 40%. We trying to find a person who can get a blood draw on her to give us an updated count on things. On Monday we spent an hour and a half at the hospital and 4 nurses trying to find a vein they could draw from. after 3 unsuccessful pokes I called it quits and we left. Hopefully we can find someone by tomorrow who can get her blood drawn.
Cardiology is following us as Noelle has an ASD and PDA, both which are categorized as small but will follow to watch and make sure that the holes close. If they don't close they will have to do surgery to close the holes.
GI is working with us to follow her progress with her feeds (bottle and g-tube). She is still taking 10-15 mls by bottle and 18-23 by pump, and hope that over time we can get her eating more by bottle.
The General surgeon says that everything is healing well with her g-tube! We are looking at operating on her hernias when she is about 6 months old. There is no rush to operate unless she develops a hard bump on her abdominal area, which he doesn't foresee happening.
Occupational therapy is working with us on keep Noelle as mobile as possible. she does have a stiff neck on one side, she always turns her head to the right and doesn't like to turn to the left. At this time she does not have torticollis yet, so we are stretching her and working with her everyday to keep her from developing torticollis and to try to get her to use the other side more.
Regional Center has come to meet us once, they have to review our case before we can get any services. We are praying that Noelle will be able to get therapy through them. They send therapists to the house to work with her on physical, speech and occupational development. This means I wouldn't have to drag the kids all out to these appointments (this would be fabulous and help me so much)! Dragging 3 kids to appointments is a day long task!
With this syndrome comes many seizures. Seizures of all types. We have learned through the neurologist of things we need to look for and what steps to take if she does have a seizure. over 90% of WHS kids have seizures at some point in their life. We are hopeful that she maybe one of the few that don't but will find out with time if she will face this additional struggle.
I feel like this is the longest and most
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