Wow...well, a lot of time as passed since my last post. Unfortunately, we are still in a holding pattern about what to do with her tonsils. I have actually scheduled a second opinion with a new doctor because we received conflicting views from her ENT and pulmonary doctors that left us a little uneasy as what steps to proceed with in regards to her tonsils. So those appointments are coming up in September and October. So much and so little has happened in the past few months. Sophia has actually had to spend two more over night stays in Riley since we spoke last. Both stays were due to illness. The common cold is no friend to us. Waah. Well the first time Sophia accidentally grabbed a glass of water and dumped it down her trach and BAM pneumonia. And people wonder why I am so anal about certain things. Sophia, for a while now, loves to pretend to eat and drink. She watches her world around her to these common everyday things and she wants to belong. She insists on having something to hold or pretend with while we have a family meal. I encourage this. Under close eye. Sophia is still ONLY gtube feed. So far, any and all food that goes into her mouth goes straight into her airway...her lungs! It is unsafe for her to eat. Though, I love to watch her pretend and I know therapeutically it is good practice. I have to watch her closely and react hastily if she does accidentally take a bit or get a little bread crumb in her mouth. Her favorite things to hold and pretend with are bread and apples. These work because they're larger and solid and she can just lick them. Well, one day someone left an unattended glass of water in sophia's reach and she naturally picked it up and "pretended" to drink. This sent mommy into a frenzy and ultimately handled us in the hospital. We actually had a pretty sickly start to summer. We took Sophia to her first tumble tots class. She rocked and absolutely loved it. However, it was our one and only visit this summer because two days later she was so super sick. We made 6 trips to the doctor in one week. I'm pretty sure it was hand, foot, mouth from the mats. YUCK. We will wait until she is older to try again. These things, these everyday involvements and typical childhood interactions are what I long for Sophia to be a part of. We encourage her to do "typical" peer things, we just wish it didn't come with such precautions and worry.
We did successfully take our first family vacation this summer. It was so liberating. It was just the three of us. We took a spontaneous road trip. It first started out as a quick trip to Niagara Falls and ended up being an east coast adventure to Maine! The intentions were to start out small and close to home for a couple days. We literally packed our van full of all of Sophia's medical equipment and for our trip. Well once we were at Niagara we realized things were going really well and if Sophia has taught us anything...it is to value the moment and LIVE life. So we did. We turned east and drove as far as we could. My husband and I have always wanted to go to Maine so ours thoughts were 'we were never going to get as close as we are now" so we hit the road.We had the most amazing time. For us, it was just liberating. Me, my husband, and SOPHIA, out on an adventure. It was so nice to have that experience. To know that we CAN if we want is a humble feeling. The best thing of all was Sophia was perfect. She was patient and happy and HEALTHY. We got home and were already talking about our next vacation. The next time we will plan a little more lol.
So I started back to work a couple weeks ago and Sophia decided to pull a 180 and got really sick out of nowhere. Literally, she went from a 99.9 fever to 105 in two hours after Tylenol. Mommy and Sophia made an emergency trip to the nearest ER and they then transported us by ambulance to Riley. Long story short, she went through a few blood tests and through several IVs to find out it was an infection from her trach. By infection I mean, she doesn't have the more defenses we have to filter out all the bad germs because of her trach. We luckily got to go home after a one night stay. We technically, two nights but neither of us got much sleep Saturday. In fact I was awake from Saturday at 5am until Sunday at 230pm before Daddy was able to come leave me for some rest. Oh our life is always eventful.
I thing that covers the biggie stuff in the past coupe months. Sophia of course is awesome as ever. We are dabbling in potty training. She will go when we take her and she will sometimes ask to go but we are still having some accidents. She can also now tell you at least one word that starts with each letter of the alphabet and vice versa. Like what letter does mom start with and she says M and we can ask what is a word that starts with C and she will say cat. Our therapists also say she has the handwriting skills of a 36 month old. She can draw circles and cross T's. She is also a be help around the house. She helps unload the silverware from dishwasher, loves the load the wash, will put her clothes in the hampers and so on. I must say it is very nice that she inherited mommy's appreciation for tidiness. I can really never brag on that girl enough.
Friday, August 22, 2014
Thursday, April 17, 2014
Well bummer
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!
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!
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
Thursday, January 23, 2014
A Two Year Journey
I have no idea where to start. I have so many wonderful things I want to share with you all about Sophia. It has been a few months since I have been able to update my blog and longer since I have been able to do photo updates. So, with saying that, be prepared to be overwhelmed with all things Sophia haha!
I cannot believe it has been two years since we started on this new journey with Sophia. Year two has been very good to us. The first year, like many first years with a new born, were the most challenging and most changing times ever. The first years with a CHARGE baby are always most critical. It is within that first year that many CHARGE babies are fighting to LIVE. We have been blessed in the second year with being able to really starting LIVING. We started the beginning of the year with a surgery, an illness that hospitalized Sophia for another week, a weekend stay in the heart center, a 24 heart monitor recording at home, a sedated MRI, a failed attempt to take her trach out, and several routine check ups. We ended 2013 with one recorded attempt to talk, LEARNING TO WALK, mastering over 100 signing words, signing and recognizing our alphabet, numbers 1-7, colors by sign and occasionally on recognition, developing a fiery personality and learning the concept of time-out (lol) and the love to sign and sing songs. Our year started a little rocky much like year one, but I can honestly say we ended on such a high note. As I reflect back on the year, first I am floored that another year as truly passed but more importantly as I look back onto 2013, I SMILE. Despite having CHARGE syndrome, despite every delay, every hospital stay, medicine, therapy session, insurance phone call and all; my child, my beautiful Sophia, who shines through it all is the reason why I can look back onto 2013 and smile such a wide, tears in my eyes, and warmth in my heart kind of smile. She is the best thing that John and I have created together. She brings us so much love and in her growing and changing and perseverance she brings us closer. I am simply just so PROUD of her and all she is doing in her life.
As a family, in 2013, we were able to experience many firsts together. It is wonderful the things having a child does to your life. It makes every average thing special. It makes every experiences, even old ones, new again. Having a "Special Needs" child amplifies these experiences!!!!! This year we got to spend a lot more time outside. We made several trips to the park. We also had our first trip to the zoo. This was huge because it was our first real adventure together with Sophia. The first trip was a test to see how well and her equipment would do without an outlet and how well we could navigate and suction her through crowds. When we visited the dolphin show, they had to get us special seats so we could bring the stroll in so we could keep sophia's stuff handy. It was great, not only did we get front row seat in front of the bleachers but Sophia LOVED the dolphins and was dancing and clapping the whole time. We made a few trips back to the zoo after that. We also had our first over night stay in a hotel with Sophia this year. We could only stay one night because of her oxygen supply but it was a success. We are weening Sophia off of oxygen as we speak so this will lessen the over night load. We will still have her big machine and monitors to attend to though. Having oxygen and knowing it runs out so quickly limits our travel:( Oh and the fact I have still not been able to drive alone with Sophia really buts a damper on some outings when we are the only two home. Maybe in 2014 that will change...maybe. We got brave this year and took Sophia out to dinner with us at a few different restaurants. We still get very nervous one about germs but two we try to be respectful and take her to places where he machine will not be a distraction. So far we have had very good experiences out in about. People of course look when he machine turns on. I expect them too that machine is as loud as hell. Generally, people look away and are very respectful after making their first curious observations. We get a lot of polite smiles and some children pointing and asking their parents what in her neck. I am grateful for polite people and parents. It makes me feel more at ease in public places with Sophia. We have had a few outings in which we needed to leave quickly because her machine started to run out of battery or she started having a coughing fit from something in the environment. Being quick and ready to move at any time comes with the territory. Speaking of move, we sold our first house this past fall. We had an offer we couldn't refuse. We are still currently searching very diligently for our new "home". We are hoping very much that the perfect house for our family and most importantly for Sophia pops up on the market soon. Fingers Crossed. As a family we were all able to celebrate being another year older together because we are all December babies. Birthdays are great but celebrating your child's birthday and throwing them special party is even better. All in all 2013 was good to the Rhodes' I hope to update more blogs with photos and videos soon.
So far the new year as been wonderful to us as well. We started 2014 getting to celebrate the union of another family by all of us being apart of their wedding ceremony. Very close friends of ours asked Sophia to be a flower girl in their wedding. I was so nervous all year thinking about her big walk down the aisle and if she would be able to walk it independently. And sure enough Sophia started walking all on her own this fall and starting walking really well a month before the wedding day. I walked hand in hand with Sophia down the aisle and then set her "free" to walk alone. It was beautiful. Sophia also got a potty chair for her birthday and so far this week she has went potty 5 times. It took a while before she actually went and I wasn't really trying to train her. I would just sit her on the potty her and there and one night she went and surprise the well ironically you know what out of me lol. AND the BONUS I accidentally got it all on video. I will cherish that one always. So far this week, she has went potty every night before getting her jammies on for bed. So far so good. Yesterday, I came home from work and the nurse showed me the new words Sophia knows. Not by sign BUT she can recognize what the word is by spelling. Sophia can recognize CAT, DOG, MOM, DAD, DOLL, BALL, AUNT and BOY by its spelling. WHAT!!! She just turned TWO. This girl has a rock star memory and an appetite to learn like no other. Today, I got a text that Sophia found the two M's and put them an inch apart on her board and then went to the bin and started searching. She then pulled out the O and placed it right in the middle of the two M's. She spelled MOM!!! I am floored!! This girl rocks my world.
I cannot believe it has been two years since we started on this new journey with Sophia. Year two has been very good to us. The first year, like many first years with a new born, were the most challenging and most changing times ever. The first years with a CHARGE baby are always most critical. It is within that first year that many CHARGE babies are fighting to LIVE. We have been blessed in the second year with being able to really starting LIVING. We started the beginning of the year with a surgery, an illness that hospitalized Sophia for another week, a weekend stay in the heart center, a 24 heart monitor recording at home, a sedated MRI, a failed attempt to take her trach out, and several routine check ups. We ended 2013 with one recorded attempt to talk, LEARNING TO WALK, mastering over 100 signing words, signing and recognizing our alphabet, numbers 1-7, colors by sign and occasionally on recognition, developing a fiery personality and learning the concept of time-out (lol) and the love to sign and sing songs. Our year started a little rocky much like year one, but I can honestly say we ended on such a high note. As I reflect back on the year, first I am floored that another year as truly passed but more importantly as I look back onto 2013, I SMILE. Despite having CHARGE syndrome, despite every delay, every hospital stay, medicine, therapy session, insurance phone call and all; my child, my beautiful Sophia, who shines through it all is the reason why I can look back onto 2013 and smile such a wide, tears in my eyes, and warmth in my heart kind of smile. She is the best thing that John and I have created together. She brings us so much love and in her growing and changing and perseverance she brings us closer. I am simply just so PROUD of her and all she is doing in her life.
As a family, in 2013, we were able to experience many firsts together. It is wonderful the things having a child does to your life. It makes every average thing special. It makes every experiences, even old ones, new again. Having a "Special Needs" child amplifies these experiences!!!!! This year we got to spend a lot more time outside. We made several trips to the park. We also had our first trip to the zoo. This was huge because it was our first real adventure together with Sophia. The first trip was a test to see how well and her equipment would do without an outlet and how well we could navigate and suction her through crowds. When we visited the dolphin show, they had to get us special seats so we could bring the stroll in so we could keep sophia's stuff handy. It was great, not only did we get front row seat in front of the bleachers but Sophia LOVED the dolphins and was dancing and clapping the whole time. We made a few trips back to the zoo after that. We also had our first over night stay in a hotel with Sophia this year. We could only stay one night because of her oxygen supply but it was a success. We are weening Sophia off of oxygen as we speak so this will lessen the over night load. We will still have her big machine and monitors to attend to though. Having oxygen and knowing it runs out so quickly limits our travel:( Oh and the fact I have still not been able to drive alone with Sophia really buts a damper on some outings when we are the only two home. Maybe in 2014 that will change...maybe. We got brave this year and took Sophia out to dinner with us at a few different restaurants. We still get very nervous one about germs but two we try to be respectful and take her to places where he machine will not be a distraction. So far we have had very good experiences out in about. People of course look when he machine turns on. I expect them too that machine is as loud as hell. Generally, people look away and are very respectful after making their first curious observations. We get a lot of polite smiles and some children pointing and asking their parents what in her neck. I am grateful for polite people and parents. It makes me feel more at ease in public places with Sophia. We have had a few outings in which we needed to leave quickly because her machine started to run out of battery or she started having a coughing fit from something in the environment. Being quick and ready to move at any time comes with the territory. Speaking of move, we sold our first house this past fall. We had an offer we couldn't refuse. We are still currently searching very diligently for our new "home". We are hoping very much that the perfect house for our family and most importantly for Sophia pops up on the market soon. Fingers Crossed. As a family we were all able to celebrate being another year older together because we are all December babies. Birthdays are great but celebrating your child's birthday and throwing them special party is even better. All in all 2013 was good to the Rhodes' I hope to update more blogs with photos and videos soon.
So far the new year as been wonderful to us as well. We started 2014 getting to celebrate the union of another family by all of us being apart of their wedding ceremony. Very close friends of ours asked Sophia to be a flower girl in their wedding. I was so nervous all year thinking about her big walk down the aisle and if she would be able to walk it independently. And sure enough Sophia started walking all on her own this fall and starting walking really well a month before the wedding day. I walked hand in hand with Sophia down the aisle and then set her "free" to walk alone. It was beautiful. Sophia also got a potty chair for her birthday and so far this week she has went potty 5 times. It took a while before she actually went and I wasn't really trying to train her. I would just sit her on the potty her and there and one night she went and surprise the well ironically you know what out of me lol. AND the BONUS I accidentally got it all on video. I will cherish that one always. So far this week, she has went potty every night before getting her jammies on for bed. So far so good. Yesterday, I came home from work and the nurse showed me the new words Sophia knows. Not by sign BUT she can recognize what the word is by spelling. Sophia can recognize CAT, DOG, MOM, DAD, DOLL, BALL, AUNT and BOY by its spelling. WHAT!!! She just turned TWO. This girl has a rock star memory and an appetite to learn like no other. Today, I got a text that Sophia found the two M's and put them an inch apart on her board and then went to the bin and started searching. She then pulled out the O and placed it right in the middle of the two M's. She spelled MOM!!! I am floored!! This girl rocks my world.
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