Today was a busy and crazy day with tons of twists and turns! The day started with physical therapy with Noelle. It went really well until Noelle "zoned out" for about 45 seconds. I was in the kitchen and heard the therapist saying "Noelle?! Noelle?! Can you hear me Noelle?" Then she started to clap her hands. Of course, I went in there to see what was going on. Noelle was not doing anything she doesn't normally do. When Noelle had her hearing test, I said she had selective hearing and I thought this was a part of it. Little did I know, the therapist thinks Noelle could be having a seizure. She was not sure, obviously, she's not a doctor. But she said that I should call her docs and get it checked out. I told her I would check with the docs to see what they want to do.
In the meantime, I had to make lunch quickly and get out the door to Noelle's Cardiology appointment. Noelle has been having low heart rates while sleeping lately. The doctor said he was not too overly concerned, but put a monitor on her for 24 hours to see the patterns. If she doesn't have an episode tonight, then we have to go in the office tomorrow and exchange it for a longer battery. He basically wants her to wear the holter until she has an episode. This should be fun...
We came home and I had an e-mail from Andon's doctor stating that most of his blood work was normal, but his white blood counts were low. She said they were not too low to cause any panic right now, but something to keep an eye on. We have to go back at the end of the week and he'll probably have to have more blood drawn. Also, Andon has always had a bald spot on the top of his head. She is concerned about the bald spot and referred him to a dermatologist. If it is what she thinks, he needs to get the spot removed because the cells can become cancerous quickly if not taken care of. She reassured me that the white blood count and the bald spot were not likely related.
Once I got done with those concerns, I had to move on to the seizure issues. I contacted the pediatrician and (duh) they told me to call her neurologist. The neurologist nurse called me back right away. She wanted to schedule an EEG soon to get a feel for if Noelle has abnormal results that would indicate seizures. Of course, we set it up for in the office and were going to have it done at the end of the week. UNTIL...she said...."and she's not on oxygen or anything right?" uhhhh..... yeah...she is!? Well, that changed everything. Now, because of her complex history and breathing issues, she has to have the EEG done at the hospital. If something were to go wrong with the sedation, they want to make sure backup is nearby. The nurse was not sure if the outpatient lab would be able to do it. By then, it was about 4:55pm. By the time I called the hospital, they were closed. The nurse told me that they might have to admit her to get the test done. If they did have to do that, they would go ahead and do the more efficient EEG and MRI. Just the thought of going back there for another night makes me want to scream. But, I'll do what I have to do for my kids!
Whew! That was my day! Of course, the poor kids nap schedules were gone and they were cranky this evening. Thank goodness for an early bedtime! When it rains it pours...and sometimes actually hails! First thing in the morning, I'll be scheduling the EEG (hopefully outpatient)!! I feel bad because I have noticed Noelle "fuzz out" for periods of time before and never even knew that could be a seizure. Oh well...live and learn....
Time for bed!! Keep the prayers coming....
xoxo,
Stacie :)
Monday, March 22, 2010
Saturday, March 20, 2010
YAY!! Back in action!
So, I don't know what happened to the blog. But as quickly as it went down...it came back up as quickly. So much has happened in the past few weeks. I'm going to need to post pictures later...but for now the update!
I took Noelle for her regular visit with the Pulmonologist. It was an AWESOME visit!! She is doing amazing and can now tolerate some time without oxygen all together. Otherwise, she is down to about a 1/2 liter of oxygen and then about 1 liter at night. I'm so proud of her progress.
We picked up her braces and shoes on Wednesday!! They are so cute...better than I could have possibly imagined. The shoes are white with pink stripes and the braces are designed with pink and purple hearts!! She is doing really well in them too and can pretty much stand on her own with the walker. The PT also brought something called a Pony Gait Trainer. This allows Noelle to straddle a seat and it allows her to move her legs and push her self around. It is so exciting!
I was out with Noelle the other day and one of the ladies in the waiting room asked me about her. I told her briefly about Noelle's story and told her that we were really lucky. She replied "No baby, your blessed!" So true...so true!!
The only other issue we've been having with our big girl is with her heart rate. It seems to dip really, really low in the middle of the night to the point that her pulse ox machine beeps off. As soon as the machine starts to beep or if I go in there and shake her a little...it comes right back up. But her heart rate should never dip below 50 and it has been going into the high 30's. Scary. We have an appointment with the cardiologist again on Monday. He said they will put a monitor on her for a while to check and see whats going on. He said as long as her heart rate is coming back up...he is not too concerned yet.
More exciting Noelle news is that we are going to be attending a Feeding Clinic down at UVA late this summer. We are going through the lengthy application process now. It is an intensive 2 week program that will hopefully minimize the amount that Noelle has to use the pump. It will get her more comfortable eating by mouth. The idea is to eat more by mouth and less by pump. They have all sorts of techniques and methods to doing this. People all over the country and world have come to UVA for this program and we are going to be lucky to attend!! I'm sooo excited! We will probably stay at the Ronald McDonald House for the 2 weeks.
My little biscuit Andon has been having some issues lately too. We visited with his new pediatrician yesterday because he has been complaining of tiredness for a few weeks now. In addition, tummy aches, back aches and "brain" aches. I noticed this week that he has been running some low grade fevers everyday as well. They took a bunch of blood yesterday and he was so brave. They are thinking he might have Lyme Disease or Mono or something like that. He's so tough! It absolutely broke my heart to watch him get his blood drawn. I'm an expert at holding Noelle down and making sure they get hers right....but have never experienced this with Andon. I seriously almost cried! I think he handled it better than I did. We should have some results on the blood work at some point next week. Other than that....we are having a BLAST outside in the nice weather.
Never in a million years did I picture myself as a stay at home mom. I thought I would be terrible and would not enjoy it at all. It is honestly the best!! I have enjoyed my time at home so much! I don't think I could ever go back to working full time. It is so nice to have fun with the kids and I work on my new business, Everyday Miracles, in the evening after bed time or during nap. I can work when I want to and set my own schedule! It is heavenly!! I have never been so relaxed. I'm finding that I'm enjoying the kids so much more as well! I have had years of rush, rush, rush....hurry, hurry, hurry! It took me a while to calm down....but I honestly love it! I would not change a thing. Everything happens for a reason!!
The March for Babies is just weeks away now! I'm so excited to be marching with my hubby and kiddos! If you haven't donated yet...please do soon!! Aunt Ada has raised so much money for our team...I am so blessed to have her helping us out!!! She has helped raise over $700 for Team Go Noelle Go!!!!!!!!! There are no words to describe my appreciation to her!! :) :) I need to add that money to the website...we are so close to our goal!!
Happy First Day of Spring everyone!! We hope that you all are enjoying the great weather as we are!! I'll post pictures soon of my peanuts!! Happy Saturday!
xoxo,
Stacie :)
I took Noelle for her regular visit with the Pulmonologist. It was an AWESOME visit!! She is doing amazing and can now tolerate some time without oxygen all together. Otherwise, she is down to about a 1/2 liter of oxygen and then about 1 liter at night. I'm so proud of her progress.
We picked up her braces and shoes on Wednesday!! They are so cute...better than I could have possibly imagined. The shoes are white with pink stripes and the braces are designed with pink and purple hearts!! She is doing really well in them too and can pretty much stand on her own with the walker. The PT also brought something called a Pony Gait Trainer. This allows Noelle to straddle a seat and it allows her to move her legs and push her self around. It is so exciting!
I was out with Noelle the other day and one of the ladies in the waiting room asked me about her. I told her briefly about Noelle's story and told her that we were really lucky. She replied "No baby, your blessed!" So true...so true!!
The only other issue we've been having with our big girl is with her heart rate. It seems to dip really, really low in the middle of the night to the point that her pulse ox machine beeps off. As soon as the machine starts to beep or if I go in there and shake her a little...it comes right back up. But her heart rate should never dip below 50 and it has been going into the high 30's. Scary. We have an appointment with the cardiologist again on Monday. He said they will put a monitor on her for a while to check and see whats going on. He said as long as her heart rate is coming back up...he is not too concerned yet.
More exciting Noelle news is that we are going to be attending a Feeding Clinic down at UVA late this summer. We are going through the lengthy application process now. It is an intensive 2 week program that will hopefully minimize the amount that Noelle has to use the pump. It will get her more comfortable eating by mouth. The idea is to eat more by mouth and less by pump. They have all sorts of techniques and methods to doing this. People all over the country and world have come to UVA for this program and we are going to be lucky to attend!! I'm sooo excited! We will probably stay at the Ronald McDonald House for the 2 weeks.
My little biscuit Andon has been having some issues lately too. We visited with his new pediatrician yesterday because he has been complaining of tiredness for a few weeks now. In addition, tummy aches, back aches and "brain" aches. I noticed this week that he has been running some low grade fevers everyday as well. They took a bunch of blood yesterday and he was so brave. They are thinking he might have Lyme Disease or Mono or something like that. He's so tough! It absolutely broke my heart to watch him get his blood drawn. I'm an expert at holding Noelle down and making sure they get hers right....but have never experienced this with Andon. I seriously almost cried! I think he handled it better than I did. We should have some results on the blood work at some point next week. Other than that....we are having a BLAST outside in the nice weather.
Never in a million years did I picture myself as a stay at home mom. I thought I would be terrible and would not enjoy it at all. It is honestly the best!! I have enjoyed my time at home so much! I don't think I could ever go back to working full time. It is so nice to have fun with the kids and I work on my new business, Everyday Miracles, in the evening after bed time or during nap. I can work when I want to and set my own schedule! It is heavenly!! I have never been so relaxed. I'm finding that I'm enjoying the kids so much more as well! I have had years of rush, rush, rush....hurry, hurry, hurry! It took me a while to calm down....but I honestly love it! I would not change a thing. Everything happens for a reason!!
The March for Babies is just weeks away now! I'm so excited to be marching with my hubby and kiddos! If you haven't donated yet...please do soon!! Aunt Ada has raised so much money for our team...I am so blessed to have her helping us out!!! She has helped raise over $700 for Team Go Noelle Go!!!!!!!!! There are no words to describe my appreciation to her!! :) :) I need to add that money to the website...we are so close to our goal!!
Happy First Day of Spring everyone!! We hope that you all are enjoying the great weather as we are!! I'll post pictures soon of my peanuts!! Happy Saturday!
xoxo,
Stacie :)
Friday, March 5, 2010
Happy March!!!
The blog has been having some technical difficulties....I took off the pictures to see if that would help! Someone email me if you can see this at snrmikels @ gmail. com. Thank you!!
We have had a pretty crazy week at the Mikels!! I took Noelle back to the Neurologist early this week. In all honesty, it was a complete waste of time. He spent less than 5 minutes with us and the only question he asked was if Noelle was having seizures. He said nothing about the MRI or anything like that. He just said that we would follow up in 6 months. Whatever….I guess that is one less thing that we have to do and leaves more play time!
Hopefully, her shoes and braces will be in next week. In addition, the physical therapist thinks that the shoes and braces will help drastically and that she will be taking steps soon. So, we got an order for a walker with a portable oxygen device attached. I’m so excited about this. This will allow Noelle to learn how to walk without having to have the wires behind her. Super news!
Andon and I were able to get out this week and get all of his soccer supplies. He was so excited and even got all dressed up in his gear for a picture (he is showing you his muscles). I can’t wait for that to start.
I am so touched and grateful for Ms. Ada (my mom says that her friends call her AJ). She is my grandmother’s high school friend and we all have considered her part of the family forever! She has really taken on a huge roll in raising money for Team Go Noelle Go and I’m so thankful for her. Ada has had Noelle on her church prayer list since the day she was born. I know all of the thoughts and prayers helped Noelle immensely during her hardest times. We even got a care package today for the kids including great handmade teddy bears made from some of the wonderful church ladies and a counting book for Andon. They were both so excited!! Ada, I am sure you are reading this… THANK YOU! There are no words to thank you for all of the hard work you are doing for such an amazing cause. Granny, you sure do have awesome friends! I know my mom and dad have been helping a lot too! I love you all! There is a button that you can click on the blog homepage that will link you directly to my March for Babies homepage. This button will allow you to donate directly online. Or you can always send me a check made out to the March of Dimes. If you need our address, please email me at snrmikels@gmail.com .We are still so far from our goal, but people like Ada get us closer and closer everyday!!! I have a bunch of flyers…if you would like to put one up at your office, school, or church….please let me know! I want to spread the word about prematurity so that people know that it can happen to any of us!! I had amazing prenatal care…and unfortunately…it didn’t matter. There is no explanation as to why Noelle came so early…but she will have to deal with all of the side effects of prematurity for the rest of her life.
Yesterday, Kathy from Ross’ and my dad’s work donated a ton of toys to us!! The kids must think it is Christmas around here! They were so excited and Andon has been playing all day with the cool horses and barn sets. We even got our first “girl” toys for Noelle. We really have not bought her a whole lot because we had Andon’s baby toys. It is super exciting to see girl toys in the house. I must confess…I was so excited about having My Little Ponies around again….I might have to fight Noelle to play with them! :)
Speaking of my little peanut….Noelle has entered a phase (like typical toddlers do) of not wanting to go to bed at night regardless of how tired she is. She got so ticked off on Wednesday night that she pulled the cannula and brand new tape off of her face. I went up and replaced it and didn’t think a whole lot about it. Yesterday morning, I noticed that she had red bumps on her face and I just figured she had torn some skin off with the tape. This morning, it was terrible. The bumps had turned into welts and there was an abundance of puss pockets underneath the clear tape (eww…I know). I pulled the tape off and it smelled terrible. So, I ran her into the pediatrician and he diagnosed her with a pretty bad bacterial infection on her face. He was glad that we came in today…because if it had waited the weekend…it probably would have been bad for her. Now she has two more medicines to add to her list. You can kind of see the bumps in the picture with the teddy bear…but it looks much worse in person. Now the tricky part begins…we can’t tape her face for a while. So, we are doing some pretty creative things to keep her oxygen on. I think it will be an interesting weekend.
Nonetheless, we are so blessed to be on this journey with precious kids…and have such wonderful family and friends to support us! I didn’t realize how long this post turned out to be!! I’ll update everyone with pictures when the shoes and walker comes in!! I’m so excited! Happy Friday!!
Xoxo,
Stacie :)
We have had a pretty crazy week at the Mikels!! I took Noelle back to the Neurologist early this week. In all honesty, it was a complete waste of time. He spent less than 5 minutes with us and the only question he asked was if Noelle was having seizures. He said nothing about the MRI or anything like that. He just said that we would follow up in 6 months. Whatever….I guess that is one less thing that we have to do and leaves more play time!
Hopefully, her shoes and braces will be in next week. In addition, the physical therapist thinks that the shoes and braces will help drastically and that she will be taking steps soon. So, we got an order for a walker with a portable oxygen device attached. I’m so excited about this. This will allow Noelle to learn how to walk without having to have the wires behind her. Super news!
Andon and I were able to get out this week and get all of his soccer supplies. He was so excited and even got all dressed up in his gear for a picture (he is showing you his muscles). I can’t wait for that to start.
I am so touched and grateful for Ms. Ada (my mom says that her friends call her AJ). She is my grandmother’s high school friend and we all have considered her part of the family forever! She has really taken on a huge roll in raising money for Team Go Noelle Go and I’m so thankful for her. Ada has had Noelle on her church prayer list since the day she was born. I know all of the thoughts and prayers helped Noelle immensely during her hardest times. We even got a care package today for the kids including great handmade teddy bears made from some of the wonderful church ladies and a counting book for Andon. They were both so excited!! Ada, I am sure you are reading this… THANK YOU! There are no words to thank you for all of the hard work you are doing for such an amazing cause. Granny, you sure do have awesome friends! I know my mom and dad have been helping a lot too! I love you all! There is a button that you can click on the blog homepage that will link you directly to my March for Babies homepage. This button will allow you to donate directly online. Or you can always send me a check made out to the March of Dimes. If you need our address, please email me at snrmikels@gmail.com .We are still so far from our goal, but people like Ada get us closer and closer everyday!!! I have a bunch of flyers…if you would like to put one up at your office, school, or church….please let me know! I want to spread the word about prematurity so that people know that it can happen to any of us!! I had amazing prenatal care…and unfortunately…it didn’t matter. There is no explanation as to why Noelle came so early…but she will have to deal with all of the side effects of prematurity for the rest of her life.
Yesterday, Kathy from Ross’ and my dad’s work donated a ton of toys to us!! The kids must think it is Christmas around here! They were so excited and Andon has been playing all day with the cool horses and barn sets. We even got our first “girl” toys for Noelle. We really have not bought her a whole lot because we had Andon’s baby toys. It is super exciting to see girl toys in the house. I must confess…I was so excited about having My Little Ponies around again….I might have to fight Noelle to play with them! :)
Speaking of my little peanut….Noelle has entered a phase (like typical toddlers do) of not wanting to go to bed at night regardless of how tired she is. She got so ticked off on Wednesday night that she pulled the cannula and brand new tape off of her face. I went up and replaced it and didn’t think a whole lot about it. Yesterday morning, I noticed that she had red bumps on her face and I just figured she had torn some skin off with the tape. This morning, it was terrible. The bumps had turned into welts and there was an abundance of puss pockets underneath the clear tape (eww…I know). I pulled the tape off and it smelled terrible. So, I ran her into the pediatrician and he diagnosed her with a pretty bad bacterial infection on her face. He was glad that we came in today…because if it had waited the weekend…it probably would have been bad for her. Now she has two more medicines to add to her list. You can kind of see the bumps in the picture with the teddy bear…but it looks much worse in person. Now the tricky part begins…we can’t tape her face for a while. So, we are doing some pretty creative things to keep her oxygen on. I think it will be an interesting weekend.
Nonetheless, we are so blessed to be on this journey with precious kids…and have such wonderful family and friends to support us! I didn’t realize how long this post turned out to be!! I’ll update everyone with pictures when the shoes and walker comes in!! I’m so excited! Happy Friday!!
Xoxo,
Stacie :)
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