Well big bummer...
Looks like Sophia's tenth procedure is going to lead to the eleventh!! Waah! We did not get the results we were expecting for Sophia's procedure Monday. Sophia did great. She of course has no issues with nurses or doctors. She has always been around them. She went back with the nurse for the bronch, no problem. Of course she had Mickey Mouse playing for Sophia on her iPad so she loved that. The nurse came back and told me that Sophia fell asleep watching Mickey and rubbing the doctors hand. Gulp! She is too sweet I swear. The procedure only lasted 45 mins and she slept for 15 minutes in recovery. When she woke up she did not cry or fuss. When they wheeled her back to us she just sat up calmly and reached for me. The only part she didn't like was the bandaid. Sophia lost it! Big giant tears when they took the bandaid off from the IV. Poor girl! She definitely wanted mommy then lol. The doctors went over the bronch results with us and said that the lower airway looks good but the upper airway is still narrow and that her tonsils are enlarged and compressing on her esophagus. His opinion was to consult ENT and our pulmonary doctor again before a sleep study. The doctors called today and the sleep study is now cancelled and we are going to be visiting ENT soon to discuss removing her tonsils and the next steps. This girl can't catch a break I swear. I am glad we did the bronch before trying to take the trach out because she would have just failed again. I guess on the bright side this may give her a better chance the next time we try. I am just dreading another surgery. She's older now and not going to forget so easily. Ugh! I just hate it for her. 11 procedures and she is not even 3!! Heck. I'm 20 plus years :) and I have only been put to sleep twice and I imagine that is the case for most adults. Well I guess all we can do is to keep moving on! And moving on!
Thursday, April 17, 2014
Sunday, April 13, 2014
All things good
I know you are all dying for photos I promise they will come soon!! We sold our house in October and have been stuck on a rental with no computer until now. We finally found a new house to call home. I'm pretty excited to finally move. It hard cramming a family and a bunch of medial equipment and a WALKING toddler into an 800 square feet home. We have a goal to be moved into our new home this week. It's been incredibly hard to find time renovate the new house with work and taking care of Sophia but we are finally seeing the light! I swear I need a clone or 6. One for mommy me, one for nurse me, one for teacher me, one for house renovating me, one for errands me and one to find a beach and relax me! Gosh I need a vacation. We all do! Thank goodness for my hardworking dedicated husband. If not for him we would not be nearly as close to the move date. I cannot wait for Sophia to see all the new rooms she will have to explore!!!
Sophia has been marvelous lately! We did have an unfortunate stay back in Riley at the end of February for pneumonia ugh! She is now back to her fab self. She has mastered the walking thing. Expect she has incredibly poor balance because of CHARGE. She tumbles and falls often. I swear I'm getting her a helmet..seriously. She just awesome. Her personality is spit fire and she makes me laugh out loud daily. And man she is a smarty pants. We had her annual review for therapy services last month and she scored a 25 out of 20 on her cognitive abilities! I knew it! This girl is a wiz. She can now count to 20 in sign. She has masters her colors. And she probably knows over 200 signs. She even out signs me half the time lol. She is starting to learn to communicate with her iPad too. And believe this... We had the big talk about her starting a developmental preschool as soon as she turns 3!!! I can't believe it!! I am so proud of her. Speaking of which, Sophia had an appointment with pulmonary last week. They took Sophia's trach out during the appointment and she didn't freak out.
She sat for several minutes without freaking out. So the doctor decided to try something and covered Sophia's trach site with her rubber-glove covered hand. Sophia again didn't freak out, turn blue, cry or anything.. She actually smiled and even took a breath out of her mouth!!!!!!!!!! Do you comprehend how AMAZING that is!!! Huge huge huge improvements!! So much so that the doctor was so impressed they scheduled Sophia a bronchoscopy for tomorrow to check her airway. Tomorrow will be Sophia's 10th trip to the OR for a procedure in which she will be put to sleep. Though the idea of putting her to sleep is always scary the purpose is positive! After the scope results are back and all looks well, we go back in on the 28th for another sleep study for decannulation!! OMG I can't imagine a life without the trach but I sure do dream about one!! I have every limb crossed for these next few visits to Riley for amazing outcomes!! The realist in me or the part that doesn't want to get hurt again is saying she will probably fail the sleep study. However, I have an optimist side that never hides! All we can do is pray! To get to these points at all means Sophia has already succeeded in some aspect or another. I take satisfaction in that! So be thinking of us and Sophia tomorrow and definitely on April 28th!!!!!!! It could be a whole new world.
I also want to share that I spoke at my former high school last night about our Riley story for a fundraiser benefiting Riley children's hospital! I was surprisingly calm. No one knows that story better than I. I went there to share a true honest to heart story that is near and dear to my heart. A story in which the ending has not been written yet. I did find myself having to choke back the tears a few times as I was recalling some pretty powerful moments to us. I hope Sophia's story was impactful and the school raised a lot of money for Riley. Riley truly is that amazing place we all hear about but deep down never want to visit until there's an emergency and then it becomes the place you thank God for. I even introduced Sophia at the end of my speech and she used her iPad to say "hi my name is Sophia". Gulp! It was a very proud moment for me. And I was so happy my family came out to support me!
April forecasts to be a very busy month for the Rhodes family! Teaching is wrapping up and is always very busy as we prepare for that much anticipated summer break, the hubby is a full time real estate agent now and he working very hard for our family (and yours too), Sophia has two HUGE procedures this month that needs lots of prayers and good juju, and we are moving into a new home! Yay for the Rhodes family adventures!!!
Sophia has been marvelous lately! We did have an unfortunate stay back in Riley at the end of February for pneumonia ugh! She is now back to her fab self. She has mastered the walking thing. Expect she has incredibly poor balance because of CHARGE. She tumbles and falls often. I swear I'm getting her a helmet..seriously. She just awesome. Her personality is spit fire and she makes me laugh out loud daily. And man she is a smarty pants. We had her annual review for therapy services last month and she scored a 25 out of 20 on her cognitive abilities! I knew it! This girl is a wiz. She can now count to 20 in sign. She has masters her colors. And she probably knows over 200 signs. She even out signs me half the time lol. She is starting to learn to communicate with her iPad too. And believe this... We had the big talk about her starting a developmental preschool as soon as she turns 3!!! I can't believe it!! I am so proud of her. Speaking of which, Sophia had an appointment with pulmonary last week. They took Sophia's trach out during the appointment and she didn't freak out.
She sat for several minutes without freaking out. So the doctor decided to try something and covered Sophia's trach site with her rubber-glove covered hand. Sophia again didn't freak out, turn blue, cry or anything.. She actually smiled and even took a breath out of her mouth!!!!!!!!!! Do you comprehend how AMAZING that is!!! Huge huge huge improvements!! So much so that the doctor was so impressed they scheduled Sophia a bronchoscopy for tomorrow to check her airway. Tomorrow will be Sophia's 10th trip to the OR for a procedure in which she will be put to sleep. Though the idea of putting her to sleep is always scary the purpose is positive! After the scope results are back and all looks well, we go back in on the 28th for another sleep study for decannulation!! OMG I can't imagine a life without the trach but I sure do dream about one!! I have every limb crossed for these next few visits to Riley for amazing outcomes!! The realist in me or the part that doesn't want to get hurt again is saying she will probably fail the sleep study. However, I have an optimist side that never hides! All we can do is pray! To get to these points at all means Sophia has already succeeded in some aspect or another. I take satisfaction in that! So be thinking of us and Sophia tomorrow and definitely on April 28th!!!!!!! It could be a whole new world.
I also want to share that I spoke at my former high school last night about our Riley story for a fundraiser benefiting Riley children's hospital! I was surprisingly calm. No one knows that story better than I. I went there to share a true honest to heart story that is near and dear to my heart. A story in which the ending has not been written yet. I did find myself having to choke back the tears a few times as I was recalling some pretty powerful moments to us. I hope Sophia's story was impactful and the school raised a lot of money for Riley. Riley truly is that amazing place we all hear about but deep down never want to visit until there's an emergency and then it becomes the place you thank God for. I even introduced Sophia at the end of my speech and she used her iPad to say "hi my name is Sophia". Gulp! It was a very proud moment for me. And I was so happy my family came out to support me!
April forecasts to be a very busy month for the Rhodes family! Teaching is wrapping up and is always very busy as we prepare for that much anticipated summer break, the hubby is a full time real estate agent now and he working very hard for our family (and yours too), Sophia has two HUGE procedures this month that needs lots of prayers and good juju, and we are moving into a new home! Yay for the Rhodes family adventures!!!
These Things... Another unpublished draft
These things have been on my mind lately.. These things I let get to me too often. These things I would never take for granted. These things I will share with you.
There are so many times I wish I had the ability to hop in my car and drive with Sophia anywhere I pleased, whenever I pleased. I wish I had the liberty and freedom to take Sophia to the grocery or to the park just the two of us. There are times I just feel locked in our own world. Literally, a prisoner of my own house because I cannot leave the house without someone to help suction Sophia in the car. I wish that every trip out of the house didn't involve lengthy preparation to make sure we have all the appropriate medical supplies and machines. I wish people could feel the anxiety it causes to unload our supplies while visiting family or understand the need for things to be set up and in place before I can even say hello. I wish I didn't have to plan our day trips based on Sophia's proximity to her suction machine, the suction machine to an outlet, and how that suctioning is going to effect where we are or who we are among.
We haven't been on a vacation since 2011. I wish we could take a trip or stay the night with a friend an not have to worry about packing equipment or how long the oxygen will last or who I have to call to set up orders. The only place we have stayed over is my grandmothers and to do that I have had to make arrangements with the medical company to deliver supplies which turns into a confusing nightmare because apparently is becomes to much of a hassle for them to switch locations for a weekend.
I wish that when we went out to eat and the waitress asks if we would like I kids menu, I could say yes.
I wish Sophia could take a bath and truly splash in the water and play with bath toys without coughing (choking) on water droplets that run in her trach. Sophia has a medical bath chair.
I wish smokers wouldn't smoke. PERIOD. STOP. You cause me anxiety.
Conversations about Sophia and school and special education and hearing impaired assistants and buses and model students are becoming to real and make me want to cry.
I wish I could hear Sophia cry or talk to laugh to yell or say mommy.
I wish I could be both a working mother and a stay at home mother because I enjoy these times teaching because it gives me a new identity and liberation and I wish I could stay at home and never miss an appointment or new experience with my ever changing child.
There are so many times I wish I had the ability to hop in my car and drive with Sophia anywhere I pleased, whenever I pleased. I wish I had the liberty and freedom to take Sophia to the grocery or to the park just the two of us. There are times I just feel locked in our own world. Literally, a prisoner of my own house because I cannot leave the house without someone to help suction Sophia in the car. I wish that every trip out of the house didn't involve lengthy preparation to make sure we have all the appropriate medical supplies and machines. I wish people could feel the anxiety it causes to unload our supplies while visiting family or understand the need for things to be set up and in place before I can even say hello. I wish I didn't have to plan our day trips based on Sophia's proximity to her suction machine, the suction machine to an outlet, and how that suctioning is going to effect where we are or who we are among.
We haven't been on a vacation since 2011. I wish we could take a trip or stay the night with a friend an not have to worry about packing equipment or how long the oxygen will last or who I have to call to set up orders. The only place we have stayed over is my grandmothers and to do that I have had to make arrangements with the medical company to deliver supplies which turns into a confusing nightmare because apparently is becomes to much of a hassle for them to switch locations for a weekend.
I wish that when we went out to eat and the waitress asks if we would like I kids menu, I could say yes.
I wish Sophia could take a bath and truly splash in the water and play with bath toys without coughing (choking) on water droplets that run in her trach. Sophia has a medical bath chair.
I wish smokers wouldn't smoke. PERIOD. STOP. You cause me anxiety.
Conversations about Sophia and school and special education and hearing impaired assistants and buses and model students are becoming to real and make me want to cry.
I wish I could hear Sophia cry or talk to laugh to yell or say mommy.
I wish I could be both a working mother and a stay at home mother because I enjoy these times teaching because it gives me a new identity and liberation and I wish I could stay at home and never miss an appointment or new experience with my ever changing child.
Transparencies... An older draft I just found
Lets be Transparent...
I still get overwhelmed
I would like to have a conversation about nothing and everything besides talking about medical stuff
I am a follower of a CHARGE parents support group and sometimes I stroll really fast over pictures out of fear and discomfort
I get really annoyed answering the same 50 million questions about Sophia's health
I get even more annoyed answering those questions to family
I am always surprised by the types of questions a stranger will ask
I have found great comfort in conversations with almost strangers
I am still flabbergasted by the responses and actions of those closest to us in regards to Sophia's care
I am actually ready to go back to work
I am excited to have a new purpose and daily normalcy
I feel selfish for wanting to go back to work
I want to make sure Sophia has the best of the bests
Doctor and hospital visits have become so routine
I enjoy cleaning because I find peace in it however my house still isn't clean enough...the OCD hasn't kicked in yet
I hate worrying about money...who wants to buy a futon?
Sophia's palsy has slightly returned and that saddens me... is that vain?
I have a great fear for having more children
I want Sophia to have a sibling so she will always have a best friend
Smokers give me great anxiety
I need to diet but cooking is relaxing and something I can do at home because I am always at home
I am eager to see Sophia walk on her own
I cannot help but feel a little jealousy when I see children Sophia's age doing all the "age appropriate things" that Sophia cannot yet do...
I kick myself in the rear for thinking things like this
Walking, Talking, Eating are things I will never take for granted
My Husband is still and will always be my best friend because truly he gets me and IT
I am tougher than I ever knew I was capable of and I thought I was pretty tough all along
I still get overwhelmed
I would like to have a conversation about nothing and everything besides talking about medical stuff
I am a follower of a CHARGE parents support group and sometimes I stroll really fast over pictures out of fear and discomfort
I get really annoyed answering the same 50 million questions about Sophia's health
I get even more annoyed answering those questions to family
I am always surprised by the types of questions a stranger will ask
I have found great comfort in conversations with almost strangers
I am still flabbergasted by the responses and actions of those closest to us in regards to Sophia's care
I am actually ready to go back to work
I am excited to have a new purpose and daily normalcy
I feel selfish for wanting to go back to work
I want to make sure Sophia has the best of the bests
Doctor and hospital visits have become so routine
I enjoy cleaning because I find peace in it however my house still isn't clean enough...the OCD hasn't kicked in yet
I hate worrying about money...who wants to buy a futon?
Sophia's palsy has slightly returned and that saddens me... is that vain?
I have a great fear for having more children
I want Sophia to have a sibling so she will always have a best friend
Smokers give me great anxiety
I need to diet but cooking is relaxing and something I can do at home because I am always at home
I am eager to see Sophia walk on her own
I cannot help but feel a little jealousy when I see children Sophia's age doing all the "age appropriate things" that Sophia cannot yet do...
I kick myself in the rear for thinking things like this
Walking, Talking, Eating are things I will never take for granted
My Husband is still and will always be my best friend because truly he gets me and IT
I am tougher than I ever knew I was capable of and I thought I was pretty tough all along
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