Doing Big Things

The trach collar trials are doing wonderful things for Sophia and openings up more possibilities for her to grow. She is already up to an hour twice a day and doing great. She transitions from vent to trach collar without notice. I just know she will be off this vent in no time... I hope and pray it. Do the same. We still have to hold tight with the two hour mark until we see the doctor again. I am hoping for radical changes then. With the trach collar Sophia is able to get on her tummy with comfort. The trach collar is still attached to the machine for now for humidity but it only has one hose and it is softer and more flexible. She has been getting on her tummy during these times and even holds her head up like a champ. We've been working with her everyday on head control and she makes subtle improvements daily. Tummy time is huge for us. With all the restrictions and surgeries before, she was never able to have it. She is still adjusting to it but she is doing it! First Steps is coming out today for her first therapy session. They are going to be so impressed with what we've been learning already. Did I mention, that Sophia turned 5 months this weekend. 5 whole months and so much to talk about and so much has been done in her little life. 5 months and she is just now growing out of her 3 months clothing. My little tiny tot! She is wonderful. Sophia's hearing and vision screens have all been pushed back until July. They wanted to wait until she was a little older for the tests. I am so anxious for the results. My husband and I were talking the other night about Sophia and the fact that so much of her and who she will be is still such a mystery. We never really know how her syndrome is truly going to affect her until we are living in that moment. Some times it is still hard for us to think of the future and all the what ifs but with everything she has been showing and doing so far I just have to keep the hope she will surprise us for the future. I am not naive that there will be things that are different /special but I think it is a mother's job to hope. To hope for the best. To allow for the best. John role has daddy is supporter and he does that well, for both of us. He grounds me when my head starts spinning and assures me that no matter the reality, we've got each other and that is okay. When everything is all said and done...it will always be us and we will always be okay.

One Month Mark

Can you believe it? We have been home for a month now. Wow, now this is a countdown I can enjoy. It is much nicer adding up the days at home than racking up the days in Riley. However, I just hope this countdown goes to infinity and beyond! It just been wonderful being at home and as a family. Sophia is already so different than she was in the hospital. She is so lively and happy. She is making more and more improvements as the days pass. She grabs and holds and even switches hands with her toys. She rolling unto her sides more. She loves being picked up more. She is even getting a little more sturdy with her neck control. Oh and that smile, that smile melts my heart. She has the best smile. I love when I smile at her and she smiles back. Best Moments! We are starting to settle into our routine with the nurses and just being at home. Things are getting easier and it is truly becoming our new normal. I am getting really crafty at packing up our stroller. The double stroller was the best purchase I have EVER made.

I have that thing backed up just perfect for our outings. We also finally broke down and bought a mini van. My little car just wasn't cutting it. We were like sardines with all of her equipment in there. The van is amazing. We definitely utilized every bit of space in there as well at least in the van John and I can both comfortably sit in the car together again with Sophia. The little things I swear never cease to amaze me anymore.

 We made our first family trip on Mother's Day. We made the journey back to my home down to spend my first mother's day with family. The trip went wonderfully. It is definitely time consuming packing and unpacking and setting her up but it was worth it to see how happy my family was to see her. It was just so great to see her sitting in my grandma's living room and to see how excited and how much in love they are with Sophia. It was a great day!

Yesterday, we had our one month check up with pulmonary. Sophia had to get her vent and lungs checked out. I was really nervous about this appointment in particular because what they told us would determine a lot for Sophia. When we got to Riley, we loaded up the stroller and headed up. Sophia does so great with transport. Once back with the doctor, I started asking the heavier hitter questions. I even popped Sophia off her vent during her weigh ins to show them what she's got. However, I got a little nervous because when I connected her back she started breathing just a little heavy. So, Sophia and I had a pep talk and I told her it was important to get it together and impress the doctors. And that she did!! The doctor finally came back in and said I have a question for you. Would you like to start trach collar trials and can you start it now. I was like uh yes, I would love too!!! It is hard to believe I actually got the answers and results I wanted yesterday.  Sophia gets to start trach collar trials twice a day for 15mins and then we increase by 15mins every three days until we reach two hours twice a day then we hold there until we see the doctor again on June 7. On June 7, we will be talking about more permanent trach collar days and the pacimere valve. The pacimere valve is a small piece that goes over the trach. This is what we want. This is make Sophia extremely portable (still with caution) but with far less tubes and wires. This also means is Sophia is able to make sound this is a time we could possibly be hearing them. To hear my baby cry for the first time or make any sounds really is something I can only imagine. I just cry dreaming for that day. I pray and hope and fill my heart with the possibility of miracles. Pray the same with me. Now, we still have to take this step by step or trial by trial. Pray Sophia's lung keep strengthening and she is able to withstand the trach collar at longer periods of time and can thrive without vent support. Also, we were told Sophia no longer needs the oxygen during the day. So that will help her strengthen her lungs as well. We still have to use CPAP with a small rate at night for her Apnea but the doctor is certain she will grow out of that as well since it wasn't previously there until coming home. So, yesterday was the best appointment so far. We've received great news and have made small steps forward. But FORWARD we march. 

Being a Mommy

As my first official Mother's Day approaches, I cannot help but think how privileged it is to be the mommy of Sophia Kay Rhodes. Tonight, she fell asleep in my arms and as I continue to watch her sleep, I think to myself how lucky and how blessed I am to have her here with me. How wonderful it is to know someone loves and depends on your very being. To know that every little thing I do from here on out on this earth is going to be done with her best interest in my heart. To know when I smile at her she smiles back and that smiles lights up my world. Being a Mother is an honor. It is a calling, a responsibility,a state of mind, a purpose, a dream come true, a challenge, a triumph, a blessing. In the 4 and half months I have worn the title, I have found motherhood to be one of the most emotional experiences of my life. I did not come into motherhood easily. I was given my challenge upfront. I was "chosen" to wear this badge and walk this walk. I was called to a great responsibility. I was called to be the mother of a child with special needs. It is a "special" title that not many can hold and not many choose to honor. I will admit at the beginning of my embankment into motherhood. I was skeptical. I was confused. I was scared. I was unsure of my ability to walk this walk. I have always known I wanted to be a mommy. It has been my dream to not just be any mother but a mommy. A mother that would make all others envious. A mother my children would be proud to call mommy. A mommy and a friend. I knew in my heart that I was meant to be called mommy someday and I knew I would honor that title and do my best and give my all to be the best. So soon, that skepticism and confusion and whys went away. As my motherhood journey launched into full force, I knew that I had found my place. I knew what I had to do without question or doubt or fear. I rose to be mommy. All it took was seeing her face, holding her in my arms, wiping the tears and comforting her pains to know this was exactly where I was meant to be. Sophia was meant for me and I was meant for her. Sophia may not have made our start to parenthood easy but she is certainly making it worthwhile.  It is an amazing gift to watch your heart leave your body and see it reside within your child. It is a true wonder to finally have joined the elite society of motherhood. It is an honor I wear proudly. On this first mother's day, I will celebrate the life of my baby girl and I will be thanking her for wonderfully turning our worlds upside down so that we are finally able to see things clearly. To see the true joys and meanings of life. I hope I make you proud someday Sophia.

Our First Trip BACK to Riley

With the weeks commotion settling, I finally have time to update you on Sophia's first trip back to Riley. Friday, as excepted, was very busy and very long. Sophia and I were up at 4 am. I guess she decided she was anxious and ready to go. So we got up, started our feed and medicines and then dozed back off for a few minutes before the nurse arrived to help with getting bathed, packed and loaded up for Riley. We were all out the door by 7 am. Our first stop was an ultrasound on her kidneys and then off to an abdomen xray. Sophia did wonderful for them both. She did not fuss a bit. After that we headed to see the urologist about her kidneys. Sophia is still showing grade 1 hydroniphrosis (inflammation of the kidneys). She is also still having grade 4 reflux back into kidneys. It is worse on the left side. The doctor suggested we switch to a different antibiotic and give it time. If time does not seem to heal her kidneys and if she starts to show signs of infections then we need to start talking about surgery. They said if anything, we hope to ride it out until she is at least school age (4 or 5) before we do surgery in order to rule out time and growth. However, it anything changes, surgery may come sooner. For now we wait and see as per usual. After that appointment, we went upstairs to see our ENT doctor. We had an hour wait to see the doctor. It actually worked in our favor because it gave us time to hook her up for her afternoon feeding. We were suppose to be scheduled for a hearing exam but unfortunately the audiologist was out early that day. The doctors have already rescheduled us for a later date. I was really eager for that exam too. So we wait again. Our ENT doctor is actually the doctor who has performed the majority of Sophia's surgeries, so he is very familiar with her case and our family. He is a wonderful guy. To the point but very patient in his explanations. He had to look at her nose to see how the atersia repair was holding up. He pulled out this huge spaghetti like scope he shoved up poor Sophie's nose. I had to hold her on my lap and hold her arms down while another doctor held her head. Mommy actually had to close her eyes for most of this one. I couldn't imagine that thing going in my nose yet alone my poor little baby girl's tiny nose. Needless to say, she HATED that..first time she cried all day. The stinkin' thing even made her nose bleed a little. Being the trooper she is, she was quickly asleep and over it. Sophia slept and recovered on the drive home. Which was good because once home we had to meet for her First Steps evaluations. The ladies said they were very impressed with Sophia's hand coordination and her ability to grab, hold, and bring things to mid-line. However, they are going to recommend physical therapy to help her with her balance, neck control, and maneuvering around the tubes. They did say a lot of her delay seemed situational based on her surgeries, hospitalization, and the trach/vent tubes. They had high hopes of catching her up soon with therapies. I will find out this week what kind of schedule and goals we are looking to achieve this week. After all was said and done Friday, mommy and Sophia was plum tuckered out. So we tried to nap and slept and regained our momentum over the weekend. Today we are refreshed and ready to take on a  new week. All and all, our first trip to Riley was an overall success.

Big Day Tomorrow

Tomorrow is going to be a very BIG and very long day for Sophia. We make our first trip back to Riley. We have to be up, ready, packed, and out the door by 7am. Which means we have to be fed and have our medicines by 5. Dressed and bathed by 6. Then start the packing and loading process. It takes a good 45mins to an hour to have everything ready to transport Sophia. Packing entails: filling the oxygen tanks, breaking down, moving, reloading, and turning on gear in car, switching Sophia's vent to travel mode, getting the van packed and organized, then quickly loading Sophia and hooking her to her monitors and vent in car. Gear includes vent, two monitors, two oxygen tanks, emergency bag, ambu, diaper bag with your normal essentials plus gtube stuff for feedings, heavy battery, suction machine, double stroller, car seat and BABY Sophia:) The double stroller purchase has been the best buy I've ever made. On our first well screen appt. I had to bring the wagon. That wagon was such a pain. I had to not only take it apart and reassemble it three times. I had to pick it up and stuff it in the trunk and fight the wind from it rolling away all while trying to pack Sophia and her gear in a timely manner. As soon as we left, I started the hunt for the stroller. Monday we had another follow up with our well baby screen and lets just say that stroller is a SAINT. AAhhh so much easier. Still a little heavy and bulky but so much easier and the nurse and I managed to find a way to make all her gear fit perfectly. So once loaded, we have our first appointment at 8am with urology for an xray on her kidneys. The xray is going to tell us if her kidney reflux has improved or worsened. She has Grade 1 hydroniphrosis with a Grade 4 reflux. This could mean we simply need to continue with our antibiotic or it may require something more. After her kidney evaluation we have an even bigger appointment with our ENT doctor for a more in depth hearing screen. As you recall, she passed the standard hearing test in the left ear and referred on the right ear. However, we CHARGE syndrome it posses possible threats with hearing loss in general. BIG prayers that Sophia's hearing is ok. Again, I will take one ear if only but BIG prayers. If there is any loss, lets pray it is only minor/insignificant. The ENT at this appointment will also check out her atersia repair and her trach sight. I think I am starting to get nervous already. One these our huge appointments and two traveling that far and that long with Sophia for the first time is going to be a little scary. I am anxious to see how she holds up with the travel and how she withstands being on the HME for so long. It will also be interesting and a take to find a place to hook her up to feed. THANK GOD FOR MY HOME NURSE!!! I seriously would not be able to do any of this without her help tomorrow. After we get home from Riley, First Steps will be meeting us at our house to evaluate Sophia for physical therapy. I had told them I did not want to meet this day because of our Riley visit but unless I wanted to wait another month this was the only option they had. I am afraid she is just going to be so pooped she doesn't do well with the evaluations. However, even if she doesn't do well this will hopefully guarantee she will be getting First Step resources. Which is exactly what we want anyway. I want Sophia to be seen by therapies on the regular basics to help her continue to improve and develop as she should. I will say this, I have already seen such improvements in her already from simply being at home these past two weeks. Sophia is doing much better with transitional moving, sitting upright easier and is even starting to control her neck movements more. She is still wobbly but improving. She is doing wonderfully with grabbing and reaching for things. The other day she even transferred a toy from one hand to the other. This is HUGE people. She is also tracking very well with her eyes! All in all the ped doctor said she was very impressed with Sophia at her well screen. Of course we have some catch up to do but regarding out trach and tubes set back, Sophia is a ROCK STAR. OH, she even rolled herself on her tummy (sorta). She can roll up onto her side pretty well and the other day I step out for second and came back and she was flopped onto her tummy (sorta) the trach tubes kinda got in the way from a complete roll over. So, First Steps is going be a great resource in helping Sophia stay on the track on improvement. Needless to say, tomorrow is going to be so exhausting on all of us, especially Sophia. Please send your prayers, good vibes, and well wishes for good news on her evaluations at both the doctors and with first steps and safe and easy travels to and from. Also, say a little pray that we all manage to stay happy campers tomorrow.

THANK YOU

This is a very special post that goes out to all of the kindhearted, supportive and loving people John and I are fortunate enough to have in our lives. Words alone cannot express just how grateful John and I are for the love, support and prayers we have been receiving on behalf of our sweet Sophia. Nothing has warmed and humbled my heart more in these desperate and heartbreaking days as all of you have with the kind words and kind gestures. How wonderful it is to be apart of two amazing little communities that have come together for the greater good of a little gal in need. I am honored to be from my little town and now I am just as honored to be apart of John's little town. The best people come from small places. The support and love we have received from everyone is simply overwhelming. If I am not crying over something at the hospital, I am crying again tears of joy and appreciation from those around me. Throughout, this entire experience I have learned a few things and have done quite a bit of soul searching. One of the best things I have realized is that people truly are good. Few and far between do people take the time to appreciate the little things in life or go out of their way to do a kind gesture for a stranger or even a close companion. Those little things matter. Those little things help the human race love one another. Be kind to one another because in the end it matter to someone. In the end it will make a difference in their life. If I have not yet had an opportunity to thank you in person. Please know you are in my heart and I am profoundly grateful for the support, love, and prayers. However, I am more grateful to know I have amazing people in my corner. Amazing people, that I cannot wait to introduce to my daughter. Amazing people, that have come together in love and support for a little girl in need. I am so blessed and proud to be the mother of a very special little lady. I am even more proud to me able to share that special little girl with the world. I truly believe in my hearts of hearts I was meant to have Sophia and Sophia is meant to change the world. She has already changed mine in so many ways. I hope she may bless your lives just the same. Again, from the bottom of our hearts John, Sophia, and myself are so thankful for all of your support, love and prayers. For each of you that has contributed to the cause, has proudly worn a Sophia bracelet, for the cards/gifts, well wishes, the meals,  and the prayers my heart is bursting with gratitude,  my eyes filled with tears of joy, and my face shines with a smile of love for all of you who have touched our lives. Thank you for believing in a little girl who I hope someday will continue to surprise the world.

I also want to give a very special THANK YOU to those involved with the Silent Art Auction in Attica in Sophia's honor. I am completely moved to tears by the overwhelming support and love my family is receiving on behalf of our sweet girl. To see an entire town rally together in support of my baby girl is something that fills my heart with so much pride and joy. I love seeing the pictures and hearing the stories of people making artworks and doing great things in honor of Sophia. Last weekend, my family came to visit Sophia at home for the first time. With them, they  brought a special gift. A gift I will treasure always. In light of the upcoming art show, they heard of a young boy that had drew a picture of Sophia. When they saw the drawing, they knew they had to buy it from the boy for us. The young boy did such an amazing job of portraying Sophia. Great talent. What makes the drawing and story even more special  is in replace of her trach  the boy drew a heart-shaped necklace. Tears, just tears. How moving it was to see his work and hear his story. Then, the next day the young man turned around and donated that money back to Sophia. If that doesn't bring tears to your eyes and compassion in your heart I don't know what else will. I cannot wait to meet and give a great big hug to this special young man for the special and priceless gift he has given us. I wish I could be there to give everyone a great big hug that has been apart of this Art Show. I just cannot thank you enough or find the right words to express my deepest gratitude towards you all. I sincerely wish Sophia, John and I could be there to share in this wonderful day with you all. In time Sophia will be up to long travels and we will be there to give big hugs to our big supporters.

Many hugs and lots of love,

Amanda, John and sweet baby Sophia

Life at Home...

Life at home is wonderful. Super busy, but wonderful. The first day at home was a bit of a blur. A joyful blur. We were greeted at home by our home healthcare team of nurses and administration as well as supply companies, RTs, and the oxygen man. I was quickly swept away from the moment with a million papers to sign. Our home nurse left early that afternoon to give John and I some family time. Later that evening we all slept on the living room floor together. It felt so good to be that close to each other and safely under one roof. We came an official family of three that night. My heart felt whole again. The rest of the week was filled with phone calls, arranging appointments, dealing with missing medical supplies, working with the home nurses to learn Sophia's routine, and John and I adjusting to our now mommy and daddy roles. At home we are able to put our MD badges in our back pockets, but we still whip them out time to time. Evenings are busy for us. Sophia's nightly routine is quite tasky. Getting her transported to her room with her all her gear takes a minute. Then we start our nightly routine of trach gauze changes and care, gtube care, tube feedings, clothes changes and bedtime stories. Followed by getting up and down all night to answer monitor and vent alarms. Sophia has been alarming her apnea monitor 3-5 times an evening. I've already spoke with the doctors and they have came to download the monitor but for now we just have to keep watching her. She also likes to keep us on our toes by disconnecting her leads and knocking loose her vent tubes. Talk about an adrenaline rush in the AM.Thank goodness for great home nursing during the day. It is wonderful to have the extra hands and eyes to help out around the house. It also allows mom and dad to get a few peaceful/worry free hours of sleep. This first week at home has already gone by so quickly. We have even had our first doctors visit already. We went for our well baby screen with our ped doc. That was definitely a test run for getting her in transport mode and all packed and ready for an outing. It certainty takes patience and organization to get her packed up and ready in a somewhat timely manner. We really are never going anywhere fast. We literally started to get her ready to leave the house two hours before we needed to leave and made it out the door just in time for our appointment. Loading that wagon is seriously either going to make me super strong or make me through out my back. Not to mention my car was packed to the brink. Sophia's poor nurse was cramped in the back. So needless to say, John and I went looking at vans today. Yup, VANS. I told my husband to face the facts, we are old and we need a van. With all of the craziness this week has brought with adjusting to home life and dealing with missing medical supplies.  Nothing at all compares to the feeling of being able to turn around and see my baby at any given moment and walk up and kiss those cheekies. Having the ease of mind and heart of being together is a gift.