I must admit, life it getting in the way on my blogging. This could be a good thing. Life you know is good! I have been feeling a need to write lately. In fact, the idea has come up a time or two to start writing seriously. Become a true blogger or story writer- I find it quite therapeutic to write. Its something I have been slacking on lately and I feel obligated to some degree to share our adventures. Mostly our adventures with Sophia. She, in fact, is our whole life.
Where to start... Well last I updated we had just transitioned over to Cincinnati Children's to start a new medical journey with Sophia. I am happy to report, we in fact made the right decision to switch hospitals for Sophia. The aero team and CHARGE clinic are without better words to say it- AMAZING. These doctors truly know their stuff. Its rewarding to walk into a place and know they have experience and to know they really have Sophia's best interests at heart. The most amazing thing to me about this group of doctors is that they are a true team. They communicate and share updates and ideas with each other weekly. They do not make any decisions or moves without consulting the TEAM first. It truly makes a significant different when everyone is on the same page; especially when dealing with such medically complex children.
This summer we spent a good month in Cincinnati. Sophia had two major surgeries. One to remove her tonsils and check her airway. We had to stay put for 10 days. We were so so nervous about bleeding and aspiration risks from the tonsil removal. My devote husband didn't close his eyes the night before her surgery. The man loves that little girl. We spent one and half days in the hospital and then the rest of the 10 days at a family friends house recovering. We were told she would be just miserable for about a week. Day two/three of recovery and I am fighting to keep the kid on the couch. Sophia is without a doubt the most resilient child I have ever come across. So for the next 8 or so days, we stayed put and really enjoyed some nice and quiet family time together. Its ironically heartwarming how a major surgery can cause the world to slow down and for ones focus to shift.
We had a 6 week turn around before Sophia's next surgery in July. This is the surgery I was threading the most. My husband and I are perfect opposites. Where he freaks, I am strong. Where I worry, he never wavers. We balance greatly between sanity and loosing our $%*T on most days. We pick each other up and that is what matters most. July's surgery is were Sophia had stents placed in her nose for 6 additional weeks. The ENT team went in and basically gave her a nose job. They removed tissues, chiseled away bone and placed plastic tubes to give Sophia an open nasal passageway. For the first few weeks, her nose was a bloody mess and Tylenol stayed on rotation. We even got some pretty gnarly nose booges out of her nose. I mean I am talking gooey, spaghetti noodle long wads of just plan goodness. I was quite satisfied when I was able to really grab a good one! Though in all seriousness the stents did added a little extra worry. Our biggest concerns were her falling or bumping them. I knew it would be painful for her and I was so afraid it would cause more damage. Luckily my fear of them going into her brain were put to bed by the fact they were looped in and out of the same holes. Plus constant suction through the stents increased the work load. It was work. But like anything, time healed. Her nose didn't look so bloody, suctioning became habit and she never fell on them. Relief. Though when that 6 week deadline arrived, I could not have been more thrilled to have them taken out. Bonus- her cute little nose stayed cute!
However, what transpired from these surgeries this summer, I would have never predicted. The goal was to open Sophia's airways. To give her the best open upper airway we could to maybe give her a fighting chance to get the trach out. One week post-op from her stent surgery and I could already start to notice air sounds coming up and out her mouth and nose. It was quite interesting to hear. I kept my cool. It was a few days before the return of the school year when we got our big surprise....actual VOCAL SOUNDS!! You heard me folks! Sophia is NOW making vocal sounds. She has never made true vocal sounds!! Ever! For 4 years, we have asked ourselves if we will ever hear her speak or say our names. And in good Sophia fashion- she blew us away. She just did it! She started making true vocal noise and surprised us all. Including herself! She was so proud. Now, Sophia has always had a great vocabulary. She can sign hundreds of words and learned them so quickly. She has also mouthed words for a very long time. She even invented this clicking sound she does to make sound for syllables. But for her to just naturally start to try to say actual words---FLOORED. Literally, it went from a few noise sounds to one day we walked in and she was trying to say "I LOVE YOU" to me. Instant sobs. I couldn't believe my ears! It was the most beautiful sounds in the world. Now to clarify, she is not speaking audible as you and I speak and she is still primarily a signer. But to me and her daddy and her nurse and family- its plain as day what she is trying to verbally say to us. It gets clearer daily. She works so hard. Now granted, she is still speaking through a trach so it sounds muffled. Like shes talking underwater BUT folks she is learning to TALK!! A worry, a want, a fear and a pray all rolled into one came true-- The sound of a sweet sweet girl saying mommy for the first time! Now I am the one without words.
Sophia has been trying to make vocal sounds for a few weeks now. I instantly wanted to share with the world, but we decided to sit on this little secret for a while. We wanted to keep it to ourselves. We wanted to rejoice in this beautiful noise. We wanted to make sure it was going to stick around. We our cautious these days. We now oh to often how things can change. We also wanted to steer clear of questions and feedback for a while. We did not want anything or anyone to lessen our experiences with this wonderful news. We also wanted to be sensitive to Sophia. We did not want to get to excited and at all make Sophia feel pressured to do something more than she was ready to do or to make her feel like we were missing something from her before. We still encourage Sophia to sign and learn new signs. Sign language will also be Sophia's first and maybe her strongest language and for this we will always be proud. Now that we have truly processed our feelings and allowed ourselves times to celebrate these new steps forward. We couldn't resist sharing her wonderful news with you any longer.
I guess it really is just something you have to hear for yourselves...
One year ago... "Hi Mommy video 1" https://youtu.be/DINA5tYYiuo
One week ago... "Hi Mommy"https://youtu.be/fUAGfHufEs
I hope you get goosebumps, I hope you understand the significance, I hope you celebrate with us. I just have so much hope and pride for this little girl. My little girl.
So even though we struggled and had reservations about Sophia's surgeries this summer, we now know the doctors are truly on the right track. We have been going back every 2 weeks for the last month to keep checking her airway. So far we have had great results. Next steps to be determined soon....
Tuesday, September 22, 2015
Monday, March 30, 2015
What a week
What a week we had in Cincinnati. So much so that I need a week to recoup. Well as I had mentioned, Sophia was going to Cincinnati to have some diagnostic testing done for the A-team. We started the week with a trip to the OR. She was being put to sleep to have all three doctors evaluate her airway. In their words, they've learned that each doctor sees differently and each knows their field particularly. Also, while under they were going to possibly dilate her nasal passage and put a camera up through her nose and into the stomach. This was to be left for 24hrs under hosptial observation. Well, once in the OR and the doctors started to look around they realized that one, the dialation would not be beneficial for Sophia because her airway in her nose had reduced so much they couldn't pass anything of the left side and the right side was tight. Big problem. Dilating simply wouldn't do. Secondly, They also deduced her tonsils and adnoid tissue was so large that on a scale of 1-4, they rated it a 5! This extra tissue as well as the nasal passage prevented the doctors from being able to pass the camera for observation. The only perk meant we didn't need to stay over night in the hospital. The down fall.. Two more surgeries. Can we ever catch a break? On the whole, the doctors felt that from trachea down her airway looked good and promising. The problem is all upper airway. The next morning we were back at it at 7am for another round of evaluations and test. This time it was a video study in which they put a small camera up Sophia's nose and down into the back of her throat. Not pleasant for most people as I'm sure you can imagine. Sophia was a trooper to say the least. However, again this procedure was cut short due to a copious amount of secretions blocking visibility as well as the tightness of her airway made camera angels difficult. The doctors were beyond impressed with Sophia's patience and tenacity. The only perk of these appointments being cut short was we were able to take Sophia to the aquarium. She totally deserved it. The best part was Sophia was selected to be the penguin grand Marshall! She led the penguin parade and got to go with daddy to met the penguins on her own. Totally precious! I will adore that memory forever! The next day we were back again for a couple of swallow study appts. These appts went as predicted. Still aspiration. Still no food by mouth. The next day we had the afternoon before Sophia's overnight sleep study, so treat number two- the zoo! It's sad when a week at the hospital is kinda like vacation. A little hospital, a little fun. It's needed. One would be bitter without a little laughter and fun mixed into all the medical jargon and procedures. Overall, I am still pleasantly pleased and hopeful with cinci. I think we've made the right decision in switching our care to a hospital that has a focus and speciality in Sophia's needs. We just now have to put our faith in their knowledge and decisions to help Sophia continue to grow and strive. As on now, we are in the waiting process before we schedule the next surgery. Until then, my big girl is starting preschool. I know it seems like an off time to start, but we and Sophia live by our own agenda :)
Monday, March 9, 2015
a new journey
I can't believe I haven't written in soooo long. I guess in a way that is a good thing because that means I do not have anything to report. For the past several months, we have been in a holding pattern. I talked last about Sophia possibly needing tonsil surgery and we had received mixed consults from various doctors. This left us confused and unsure as to what next steps should be taken. With one doctor telling us no and another telling us yes and another doctor we weren't comfortable left, it left us twisted. My husband is huge on research. So he did his. He discovered that Cincinnati Children's Hospital was possibly starting a CHARGE syndrome clinic amongst also reading studies from some prestigious doctors from cincy. So we consulted one more time with our pulmonary doctor at Riley (back in October) and she confirmed that Cincinnati Children's would be a smart move for Sophia. She spoke highly about a program called the Aerodigestive team. The A-team we are calling it. Believe it or not, but it consists of a team of doctors working TOGETHER. Communicating together. What the What? The team is made up of ENT, pulmonary, and GI doctors that specialize in their areas. That in itself had us convinced to make the switch. I have spent months with insurance, communicating with doctors, filling out paperwork, and so many phone calls to try and get us our initial appointments with the A-team. Finally, in January I received a call the insurance was pending. A few more weeks later-approved. Finally, last month (after several more phone calls)- a schedule. I owe a huge thank you to my husband for encouraging us to pursue the switch!
Last week, we made our first trip to Cincinnati Children's Hospital. The first day was a formality really. Sophia met with anethesia first to go over her history before taking her into any ORs. Then the girl had an ECHO and EKG. Poor thing wasn't allowed to eat all day because normally they put small children to sleep during these procedures because they can't sit still. Not Sophia. She's a pro and didn't require it. Lastly. we met with the cardiology doctor to confirm she in fact has a bicuspid aortic valve (we already knew this) that was mild and she was clear for the OR. Day 1 of 7 complete. The next morning we were back again at 8 am for a sedated chest CT scan. This went well. A little upset with some cold /procedure-oriented bedside manner but nothing to get excited about. Sophia went right to sleep with a giggle and giving mommy a tickle:) She came out grumpy. We fed her and then walking down the hallway she lost her fed..ick. I have never been anywhere were people are so eager and willing to help you clean up vomit. I literally had two hands over my shoulders handing me napkins instantly and people throwing down puke pads. Poor girl. But do not fear because Miss Sophia was monkeying around a mere thirty minutes later. After some time to kill, we went to meet our first A-team team-member, ENT. Dr. Choo had me at hello so to say. He walked in an shook John's hand, my hand, and without a beat Sophia reached out and shook his hand. He was impressed. In fact on more than one occasion, he repeated how great she looked and how smart she seemed. What got me, literally crying was when he mentioned is end goal is communication and how he loves when his patients come back years later and say "Hi, Dr. Choo". Oh, how we long for that day. Its emotional. Sophia communicated fantastically with sign but to hear her will make me speechless.
What sealed the deal for my husband was the fact that even though clinically her tonsils looks like they need to be removed. He is a totally picture guy. He wants to know how everything is functioning before he makes any decisions to remove her tonsils and is aware it is in fact a major surgery. Especially with complicated children like Sophia. The best part though is that Dr. Choo asked us to be apart of the CHARGE syndrome clinic. This means we will have a person contact us regularly to set up all of Sophia's appointments and we will meet them all on the same day. More over- THEY ALL SPECIALIZE IN CHARGE syndrome and research. Worth its weight in gold. Victory.
After the meet and greet with Dr. Choo we went on to meet the pulmonary partner in our A-team. Dr. Wood. He is a seasoned doctor who believes his patients are guilty until proven innocent. He end game is to make his patients tax payers. Dr. Wood went over the chest CT with us. He was pleasantly pleased with the anatomy of her lungs. Nothing alarming or concerning popped up considering her history. He used the world optimistic. Next we looked over Sophia. I didn't realize right away but he covered her trach with his gloved hand for a few minutes. While doing so, he looked over at me and mouthed, ''Oh my, this might be a quicker process than we think". WOOT WOOT! He said again that was very reassuring but everyone's guilty until proven innocent. End of day two.
Next week, we are back to Cincy for 6 more days of investigative procedures. First, they are going to put little miss asleep for the 12 time for a flex bronch. All three doctors from the team will each take their turn looking into Sophia's airway. The admitted their previous faults and realized that each doctor see things differently and more eyes are in fact better than one. After each looks around, they will put a camera up through Sophia's nose and down into her airway. They will leave that over night in the hospital to observe her breathing and reflux and gather more information. The next day we will have two types of swallow studies. We will meet with the A-team the following day and lastly we will have a sleep study. This will be an exhausting week. The doctors are doing all of these diagnostic procedures just to get to know Sophia before they make their game plan. You know what I really like, they have already had two conferences discussing Sophia before anyone laid eyes on her. Amazing. The ultimate goal (like is has always been) is to get the trach removed, her eating, and speaking. I am so far pleasantly pleased and very hopeful for what these new doctors have in store for Sophia. Its the total package really. And no one deserve a better package than Sophia. That kid has a heart of gold and willpower to envy. I mother and see her daily and yet I find myself looking to her in awe. The girl even signed to me the next day after the appointments that she had fun with mommy and daddy at the doctor. smh. what kid. Mine of course. She is one of a kind.
Please pray and send good vibes as we continue to embark on the next leg of our tremendous journey with Sophia Kay.
Last week, we made our first trip to Cincinnati Children's Hospital. The first day was a formality really. Sophia met with anethesia first to go over her history before taking her into any ORs. Then the girl had an ECHO and EKG. Poor thing wasn't allowed to eat all day because normally they put small children to sleep during these procedures because they can't sit still. Not Sophia. She's a pro and didn't require it. Lastly. we met with the cardiology doctor to confirm she in fact has a bicuspid aortic valve (we already knew this) that was mild and she was clear for the OR. Day 1 of 7 complete. The next morning we were back again at 8 am for a sedated chest CT scan. This went well. A little upset with some cold /procedure-oriented bedside manner but nothing to get excited about. Sophia went right to sleep with a giggle and giving mommy a tickle:) She came out grumpy. We fed her and then walking down the hallway she lost her fed..ick. I have never been anywhere were people are so eager and willing to help you clean up vomit. I literally had two hands over my shoulders handing me napkins instantly and people throwing down puke pads. Poor girl. But do not fear because Miss Sophia was monkeying around a mere thirty minutes later. After some time to kill, we went to meet our first A-team team-member, ENT. Dr. Choo had me at hello so to say. He walked in an shook John's hand, my hand, and without a beat Sophia reached out and shook his hand. He was impressed. In fact on more than one occasion, he repeated how great she looked and how smart she seemed. What got me, literally crying was when he mentioned is end goal is communication and how he loves when his patients come back years later and say "Hi, Dr. Choo". Oh, how we long for that day. Its emotional. Sophia communicated fantastically with sign but to hear her will make me speechless.
What sealed the deal for my husband was the fact that even though clinically her tonsils looks like they need to be removed. He is a totally picture guy. He wants to know how everything is functioning before he makes any decisions to remove her tonsils and is aware it is in fact a major surgery. Especially with complicated children like Sophia. The best part though is that Dr. Choo asked us to be apart of the CHARGE syndrome clinic. This means we will have a person contact us regularly to set up all of Sophia's appointments and we will meet them all on the same day. More over- THEY ALL SPECIALIZE IN CHARGE syndrome and research. Worth its weight in gold. Victory.
After the meet and greet with Dr. Choo we went on to meet the pulmonary partner in our A-team. Dr. Wood. He is a seasoned doctor who believes his patients are guilty until proven innocent. He end game is to make his patients tax payers. Dr. Wood went over the chest CT with us. He was pleasantly pleased with the anatomy of her lungs. Nothing alarming or concerning popped up considering her history. He used the world optimistic. Next we looked over Sophia. I didn't realize right away but he covered her trach with his gloved hand for a few minutes. While doing so, he looked over at me and mouthed, ''Oh my, this might be a quicker process than we think". WOOT WOOT! He said again that was very reassuring but everyone's guilty until proven innocent. End of day two.
Next week, we are back to Cincy for 6 more days of investigative procedures. First, they are going to put little miss asleep for the 12 time for a flex bronch. All three doctors from the team will each take their turn looking into Sophia's airway. The admitted their previous faults and realized that each doctor see things differently and more eyes are in fact better than one. After each looks around, they will put a camera up through Sophia's nose and down into her airway. They will leave that over night in the hospital to observe her breathing and reflux and gather more information. The next day we will have two types of swallow studies. We will meet with the A-team the following day and lastly we will have a sleep study. This will be an exhausting week. The doctors are doing all of these diagnostic procedures just to get to know Sophia before they make their game plan. You know what I really like, they have already had two conferences discussing Sophia before anyone laid eyes on her. Amazing. The ultimate goal (like is has always been) is to get the trach removed, her eating, and speaking. I am so far pleasantly pleased and very hopeful for what these new doctors have in store for Sophia. Its the total package really. And no one deserve a better package than Sophia. That kid has a heart of gold and willpower to envy. I mother and see her daily and yet I find myself looking to her in awe. The girl even signed to me the next day after the appointments that she had fun with mommy and daddy at the doctor. smh. what kid. Mine of course. She is one of a kind.
Please pray and send good vibes as we continue to embark on the next leg of our tremendous journey with Sophia Kay.
Friday, August 22, 2014
Passing Times
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.
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.
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.
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