Wow! It's been a while and much has happened over the last 6 months, to the point where I'm not even sure where to begin! The beginning of summer was pretty great! We celebrated Noelle's third birthday in princess style and she was thrilled. We finally were able to get a second opinion at CHOP...however, it was on Andon's birthday. So, we packed up and headed to Philly as a family. He had ice cream for every meal and celebrated with a cookout once we got home!! CHOP was great! They have some great ideas about her lungs and if and when they can be fixed. The plan was to come home and run all the ideas by our home up pulmonologist and let him run with them. Unfortunately, Noelle got really sick in August. Her stomach completely shut down and she was admitted for 4 1/2 weeks at Fairfax. Finally, when they decided not to try anything new and really to have no solution...I made the tough decision to transfer her to CHOP. Within 24 hours, the docs had a solution and made the calls on how to fix it. We were home 6 days later. Just 4 days before Andon started kindergarten!! I was ecstatic!
Andon started kindergarten at our local public elementary school. Thank God I decided to register him with the public schools when I did. I lost the entire end of summer being at the hospital with Noelle. I didn't have time to shop around for a private school for him. I couldn't be more thankful. His teachers are wonderful and he is doing very well! He is a super smart kid and is exceeding the typical kindergarten goals. They have a behavior system that involves red, yellow and green lights to signify how the child's behavior was throughout the day. Andon always comes home with green lights, meaning great behavior. Andon also started Taekwondo in the fall as well. He is doing really well and enjoys everything about it, particularly screaming "hiyyyyaaaaa" while kicking or punching. He seems to be maturing way too quickly and continues to be obsessed with girls. He started writing notes and drawing pictures for the bus patrol within the first few weeks of school. He has now asked for a sleep over with her and I can't help but giggle at him. There is just something so cute about a 5 year olds pure innocence. He can now read and sound out just about anything and will correct me quickly if I try and sneak something by him. In fact, he frequently reads emails over my shoulder and reads the tv channels to know what's really on versus what I just say is or is not on. He is so bright, kind, friendly, sensitive and is just all around a terrific kid.
After Noelle got out of the hospital, she was able to start school on time as a much skinner Noey. The tummy issues resolved and life went on like normal. We now have a pretty good support system up at CHOP. We are in the process of transferring the majority of the care up there. Anything GI related will not be handled at Fairfax from now on. Noelle transferred schools and now goes to the same public school Andon does....which is super easy for me.
Both the kiddos are adjusting well to the new schedules and new germs. They have both been sick off and on since Halloween but we have been able to stay at home! This year seems to be flying by and is now just about over. We are really excited about Christmas this year and it will surely be the best year yet with the kids being a bit older. That's my update for now. It's late....I'll seriously try to be better about updating this thing!! Happy Holidays....to anyone that reads this..l
Xoxo,
Stacie :)
Monday, December 19, 2011
Monday, May 16, 2011
Yay for Spring!!!
We could not be happier to see spring arrive in the Mikels house!!! It has been quite the sick winter around here and warm weather and sunshine are a welcome addition. We have had a pretty great couple of months and are really enjoying our new house. I must say, I have finally embraced living out here in Front Royal. I have found friends, a great church, and people that truly care about our family. Ross asked me if I wanted to move back to NOVA eventually and my answer was "No!" Our life is out here and we love it. Of course, I miss many of our NOVA friends...and don't get to see them as often as I want to.
Ross and I are still on the fence about Andon's Kindergarten placement. We have signed him up in the public school system out here...but are still weighing our options with private christian schools in the area. There are several choices...I just need to get out and tour them! Of course, we may keep him at Dynamic Life. We are just not sure at this point. It was bittersweet to register him for public school. It seems like yesterday that he was my little 6 lb peanut. Otherwise, Andon is doing wonderful. He is really progressing with reading and tries to read EVERYTHING...especially while we drive. I just can't believe what a big boy he has become.
As always, Noelle has the longest report. 2011 has been so amazing and so devastating for Noelle. She is progressing in every developmental area. She is really starting to talk and is now putting two words together "Dora Book," "No Mommy", "more please." She is such a big girl!! She is walking really well now, attempting to jump and attempting to run. Her Physical Therapist even said we could graduate to only using her orthopedic braces 50% of the time.
Unfortunately, her lungs seem to be struggling more and more. No one is really sure why...but she seems to continue to fight her lungs. Doing any type of gross motor really tires her out and makes her work extremely hard to breathe. Her lungs are the only aspect of her that is not consistently progressing. Last month, she was admitted for a Bronchoscopy. The docs did general anesthesia and went down her windpipe with a scope to see if there were any glaring issues with her airways. The study showed that she has slightly twisted airways which are smaller than usual. However, the docs decided that these abnormal ties should not hinder her breathing more than usual. So, we decided at this point...maybe her issues were vascular. We tried a trial of the medication called Sildenafil. Which is basically viagra (how many of you can say that your baby girl was on viagra?). We have had many laughs about it. To make a super long story somewhat short...it didn't work either. We were hoping that the increased blood flow between the heart and lungs would help her tremendously. However, after 4 days...we had to discontinue. She was much more out of breath than normal and her school was even calling me because they were even uncomfortable with her breathing. Even after coming off the medication, she has continued to struggle...so I'm not convinced that the medication made things worse. But who knows?!
This basically puts us back to square 1 with her lungs. Noelle goes back to the pulmonologist on Thursday and we are hoping to figure out when the trip to CHOP will be for our second opinion. It is time to get some fresh eyes and a fresh perspective on Noelle. Noelle could really care less that her lungs don't work very well. Unfortunately, this also means that she cannot self regulate when to stop. She will go-go-go until literally she is too tired to keep going. You can hear her wheezing across the room before she stops herself.
Great news...last month she also completed a 3 day EEG at Children's National in DC. This test showed that she does not have silent seizures!!!
So, that is basically where we are at. We are ready for summer and fun! We leave for the Outer Banks during Memorial Day week and could not be more excited!! Hope everyone is having a great spring!! I will try to update as soon as I have more information about our CHOP visit.
xoxo,
Stacie :)
Ross and I are still on the fence about Andon's Kindergarten placement. We have signed him up in the public school system out here...but are still weighing our options with private christian schools in the area. There are several choices...I just need to get out and tour them! Of course, we may keep him at Dynamic Life. We are just not sure at this point. It was bittersweet to register him for public school. It seems like yesterday that he was my little 6 lb peanut. Otherwise, Andon is doing wonderful. He is really progressing with reading and tries to read EVERYTHING...especially while we drive. I just can't believe what a big boy he has become.
As always, Noelle has the longest report. 2011 has been so amazing and so devastating for Noelle. She is progressing in every developmental area. She is really starting to talk and is now putting two words together "Dora Book," "No Mommy", "more please." She is such a big girl!! She is walking really well now, attempting to jump and attempting to run. Her Physical Therapist even said we could graduate to only using her orthopedic braces 50% of the time.
Unfortunately, her lungs seem to be struggling more and more. No one is really sure why...but she seems to continue to fight her lungs. Doing any type of gross motor really tires her out and makes her work extremely hard to breathe. Her lungs are the only aspect of her that is not consistently progressing. Last month, she was admitted for a Bronchoscopy. The docs did general anesthesia and went down her windpipe with a scope to see if there were any glaring issues with her airways. The study showed that she has slightly twisted airways which are smaller than usual. However, the docs decided that these abnormal ties should not hinder her breathing more than usual. So, we decided at this point...maybe her issues were vascular. We tried a trial of the medication called Sildenafil. Which is basically viagra (how many of you can say that your baby girl was on viagra?). We have had many laughs about it. To make a super long story somewhat short...it didn't work either. We were hoping that the increased blood flow between the heart and lungs would help her tremendously. However, after 4 days...we had to discontinue. She was much more out of breath than normal and her school was even calling me because they were even uncomfortable with her breathing. Even after coming off the medication, she has continued to struggle...so I'm not convinced that the medication made things worse. But who knows?!
This basically puts us back to square 1 with her lungs. Noelle goes back to the pulmonologist on Thursday and we are hoping to figure out when the trip to CHOP will be for our second opinion. It is time to get some fresh eyes and a fresh perspective on Noelle. Noelle could really care less that her lungs don't work very well. Unfortunately, this also means that she cannot self regulate when to stop. She will go-go-go until literally she is too tired to keep going. You can hear her wheezing across the room before she stops herself.
Great news...last month she also completed a 3 day EEG at Children's National in DC. This test showed that she does not have silent seizures!!!
So, that is basically where we are at. We are ready for summer and fun! We leave for the Outer Banks during Memorial Day week and could not be more excited!! Hope everyone is having a great spring!! I will try to update as soon as I have more information about our CHOP visit.
xoxo,
Stacie :)
Wednesday, March 23, 2011
Fresh Start!
We are finally moved in and are loving our new smaller home! It was quite the process to move from a home probably triple the size of this house. But we love it! Noelle can get around the home with ease and doesn't have to be trapped in one room because of oxygen tubing. She can now pretty much roam the house with the concentrator in the middle of the house. One level living is where its at!! I LOVE IT! I can't believe we hesitated to do this! Our old house actually goes up for auction at the courthouse today. I'm happy to be done with it all. Our bankruptcy was officially closed this past week as well. It is a great feeling to have a fresh start financially.
Andon is doing great in school and is starting to read! He amazed me last night when he spelled out that he was ready for his B-A-T-H! He is really sounding out letters and sounds. His education at Dynamic Life has been amazing. I love them. We are considering keeping him there for private kindergarten because they have been truly a blessing for Andon. April 12th is kindergarten registration at the public school he would go to...so we need to make a decision soon. His school had a family night recently and he got up with his class and sang. I couldn't be any more of a proud mama! My boy is growing up before my eyes. I tried to sign him up for T-ball...but I was too late! :( Who knew T-ball signups occured in late January.
It's been a bit of a crazy winter here. Poor Andon was the first to get sick. He had a high fever and tested positive for the flu. It was a rough two weeks for the poor kiddo. Of course, he shared. Noelle was diagnosed with the flu and RSV and admitted to Fairfax for 6 days. I haven't seen her that sick in quite some time. She just slept all day and woke up and cried when people messed with her. 6 days for RSV/flu is not that bad I guess! :)
Basically, Noelle has been sick on and off all winter. Her lungs of course have taken a bit of a hit. Noelle's main pulmonologist (Dr. Fields) and I have been discussing getting a second opinion for a while now. We had started to consult with Nationwide Children's Hospital in Ohio. They have a great BPD (Bronchopulmonary Dysplasia-which is the chronic lung disease that she has) program. To make a long story short, we asked to come up there for an actual evaluation (per Dr. Fields request) and they stated that she had aged out of the program and they were not going to be able to help us. With that, we decided that if we were going to travel to get a second opinion...we were going to go to the best. Children's Hospital of Philadelphia (CHOP) has the #1 Pulmonary rating in the country. So, we are in the process of trying to get in there soon. I'm not sure what the process is or how long we'll be up there...but I'm ready to go! There must be another reason for her rollercoaster lungs. One day she'll have a great day...the next day, she'll be working so hard and wheezing. It makes no sense.
The great news is....Noelle is progressing in every other way!!! She is really starting to babble and try to put words together. She can form the words with her mouth...but can't quite get them out. It's getting a lot better though. I would say her favorite words are, "NO!" "Mama," "Dada," and "BroBro," which is what she calls Andon. She is walking confidently and trying to jump (which is hysterical to watch!). I have an app on my iPod that has helped her tremedously and she can now identify her shapes and colors. She loves to play hide and seek with her brother! She covers her eyes and attempts to count (I say "one" and she says "dah", I say "two" and she says "dah", and so on and so forth). She loves to listen to music on my iPod...she LOVES to dance and shake her booty! She still has quite the strong personality. She now stomps her foot, throws fits and does other appropriate 2 year old actions. Noelle even went into her room and slammed the door in my face one day when she was mad. It wasn't funny at the time but I can't help but laugh when I think about it now. She acts like she owns the pulmonology office and gets highly offended if people pass her by without saying hi. She walks right back to her room and waves to everyone on the way. She is really a sassy girl. Noelle has always known what she wants...I don't think that will ever change.
I know God has a plan for our family and I put a lot of faith in that. It's not easy to raise a kid with special needs. She makes it fun a lot of times...thank God for her great personality!! She really can go with the flow much better than any kid I know. Sometimes much better than me...
Hope everyone is doing well. Noelle just layed down on the floor and is signing that she's tired. Better go put her down.
xoxo,
Stacie
Andon is doing great in school and is starting to read! He amazed me last night when he spelled out that he was ready for his B-A-T-H! He is really sounding out letters and sounds. His education at Dynamic Life has been amazing. I love them. We are considering keeping him there for private kindergarten because they have been truly a blessing for Andon. April 12th is kindergarten registration at the public school he would go to...so we need to make a decision soon. His school had a family night recently and he got up with his class and sang. I couldn't be any more of a proud mama! My boy is growing up before my eyes. I tried to sign him up for T-ball...but I was too late! :( Who knew T-ball signups occured in late January.
It's been a bit of a crazy winter here. Poor Andon was the first to get sick. He had a high fever and tested positive for the flu. It was a rough two weeks for the poor kiddo. Of course, he shared. Noelle was diagnosed with the flu and RSV and admitted to Fairfax for 6 days. I haven't seen her that sick in quite some time. She just slept all day and woke up and cried when people messed with her. 6 days for RSV/flu is not that bad I guess! :)
Basically, Noelle has been sick on and off all winter. Her lungs of course have taken a bit of a hit. Noelle's main pulmonologist (Dr. Fields) and I have been discussing getting a second opinion for a while now. We had started to consult with Nationwide Children's Hospital in Ohio. They have a great BPD (Bronchopulmonary Dysplasia-which is the chronic lung disease that she has) program. To make a long story short, we asked to come up there for an actual evaluation (per Dr. Fields request) and they stated that she had aged out of the program and they were not going to be able to help us. With that, we decided that if we were going to travel to get a second opinion...we were going to go to the best. Children's Hospital of Philadelphia (CHOP) has the #1 Pulmonary rating in the country. So, we are in the process of trying to get in there soon. I'm not sure what the process is or how long we'll be up there...but I'm ready to go! There must be another reason for her rollercoaster lungs. One day she'll have a great day...the next day, she'll be working so hard and wheezing. It makes no sense.
The great news is....Noelle is progressing in every other way!!! She is really starting to babble and try to put words together. She can form the words with her mouth...but can't quite get them out. It's getting a lot better though. I would say her favorite words are, "NO!" "Mama," "Dada," and "BroBro," which is what she calls Andon. She is walking confidently and trying to jump (which is hysterical to watch!). I have an app on my iPod that has helped her tremedously and she can now identify her shapes and colors. She loves to play hide and seek with her brother! She covers her eyes and attempts to count (I say "one" and she says "dah", I say "two" and she says "dah", and so on and so forth). She loves to listen to music on my iPod...she LOVES to dance and shake her booty! She still has quite the strong personality. She now stomps her foot, throws fits and does other appropriate 2 year old actions. Noelle even went into her room and slammed the door in my face one day when she was mad. It wasn't funny at the time but I can't help but laugh when I think about it now. She acts like she owns the pulmonology office and gets highly offended if people pass her by without saying hi. She walks right back to her room and waves to everyone on the way. She is really a sassy girl. Noelle has always known what she wants...I don't think that will ever change.
I know God has a plan for our family and I put a lot of faith in that. It's not easy to raise a kid with special needs. She makes it fun a lot of times...thank God for her great personality!! She really can go with the flow much better than any kid I know. Sometimes much better than me...
Hope everyone is doing well. Noelle just layed down on the floor and is signing that she's tired. Better go put her down.
xoxo,
Stacie
Tuesday, January 11, 2011
Hello 2011!
When is it not a little nutty around the Mikels house? We are finally in the process of our big move to the new rental home! YAY!! We are hoping the big furniture can be moved at the latest one week from today. We are all excited to get a fresh start. We go to Bankruptcy Court in about two weeks. We are planning our first and only "We went Bankrupt and are lovin' it " party!! Hopefully, this will happen sometime in February after we get settled!
Noelle has had some issues lately health wise. Her oxygen/nebulizer needs have increased and some nights we put her back on high flow to make her more comfortable. Steroids have been a great friend to her off and on forever...and they continue to be. She works so hard everyday just to breathe and has been sleeping and napping much more frequently. She has been much more fatigued that sometimes she has a hard time just climbing onto the couch...which she has been doing with ease since the summer. She really likes to snuggle on the couch instead of getting down to play. She has pretty much stopped eating by mouth completely. My least favorite is that she is back to gagging/retching/coughing.
Thanks to one of Noelle's nurses in the NICU...I was able to get in touch with a mom that had a kid much worse than Noelle. That child was transfered to a hospital in Columbus, Ohio because they have a special unit for kids with severe chronic lung disease. That child is now home and actually doing much better than Noelle. The statistics for Nationwide Children's Hospital are amazing. The readmission rates for this hospital are about 3-4%...where as the typical readmission rate from NICU's across the nation ranges from 33-40%. So its clear they know what they are doing. The pulmonologist and I both decided that it was time to try something new....
So we have been consulting with a great doctor in Columbus. She is making a few changes like switching her diuretic and increasing calories. The biggest change is that she wants to try Bipap at night. She thinks that if Noelle could just get some relief...things would be a lot better. Bipap seems to work really well up there. Noelle also has to go back and see the cardiologist and get an Echo (thats today). We are meeting with the sleep doctor to get the bipap hooked up on Thursday. My great hope is that Noelle will realize that it is helping and won't fight the bipap...yeah...its a great hope. For those of you that don't know what bipap is...it is very similar to CPAP (which people use for sleep apnea). It provides positive pressure so that she doesn't have to work so hard.
We are really hoping that these changes will provide Noelle with some breathing relief. If not, we will probably be going up to Children's in Ohio for a little while to let them take a look at her. I'm really hoping that things can be fixed at home!
Thats about it! Just a few updates about Noelle. I'll update again when we are settled in our new home! I can't wait (believe it or not) to be in a smaller space!! It'll be easier to decorate and CLEAN! :) YAY!
Hope everyone had a fantastic start to 2011!
xoxo,
Stacie :)
Noelle has had some issues lately health wise. Her oxygen/nebulizer needs have increased and some nights we put her back on high flow to make her more comfortable. Steroids have been a great friend to her off and on forever...and they continue to be. She works so hard everyday just to breathe and has been sleeping and napping much more frequently. She has been much more fatigued that sometimes she has a hard time just climbing onto the couch...which she has been doing with ease since the summer. She really likes to snuggle on the couch instead of getting down to play. She has pretty much stopped eating by mouth completely. My least favorite is that she is back to gagging/retching/coughing.
Thanks to one of Noelle's nurses in the NICU...I was able to get in touch with a mom that had a kid much worse than Noelle. That child was transfered to a hospital in Columbus, Ohio because they have a special unit for kids with severe chronic lung disease. That child is now home and actually doing much better than Noelle. The statistics for Nationwide Children's Hospital are amazing. The readmission rates for this hospital are about 3-4%...where as the typical readmission rate from NICU's across the nation ranges from 33-40%. So its clear they know what they are doing. The pulmonologist and I both decided that it was time to try something new....
So we have been consulting with a great doctor in Columbus. She is making a few changes like switching her diuretic and increasing calories. The biggest change is that she wants to try Bipap at night. She thinks that if Noelle could just get some relief...things would be a lot better. Bipap seems to work really well up there. Noelle also has to go back and see the cardiologist and get an Echo (thats today). We are meeting with the sleep doctor to get the bipap hooked up on Thursday. My great hope is that Noelle will realize that it is helping and won't fight the bipap...yeah...its a great hope. For those of you that don't know what bipap is...it is very similar to CPAP (which people use for sleep apnea). It provides positive pressure so that she doesn't have to work so hard.
We are really hoping that these changes will provide Noelle with some breathing relief. If not, we will probably be going up to Children's in Ohio for a little while to let them take a look at her. I'm really hoping that things can be fixed at home!
Thats about it! Just a few updates about Noelle. I'll update again when we are settled in our new home! I can't wait (believe it or not) to be in a smaller space!! It'll be easier to decorate and CLEAN! :) YAY!
Hope everyone had a fantastic start to 2011!
xoxo,
Stacie :)
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