We have had an eventful time here in Baltimore since my last post. Kaydence has been undergoing quite a bit of therapy. She has Occupational Therapy (OT) and Speech Therapy four days a week, and Physical Therapy two days a week. I am sincerely thankful for all of it. Speech and OT are a regular part of the feeding program, and PT is our bonus.
Speech and OT can address lots of issues, but for Kaydence, Speech and OT both focus on oral motor skills and acceptance of new textures. OT also works on self-feeding skills. We are making slow progress here, but we will make more progress before we leave. We will never again have the opportunity for such an intensive workout so many days in week, but I sure wish she could. I wish we could have had much more therapy when she was younger and maybe we wouldn't be so far behind. I also feel like we are starting over on the texture acceptance because we were grinding up cheerios, puffs, and crackers when we went to Dallas for therapy, but here we are.
Physical therapy is trying to help Kaydence learn to walk with her new cables that rotate her feet our correctly. Every single time I strap those on her, I can only think about the movie Forrest Gump. I have even told her those are her new magic shoes and they will take her anywhere. She is learning and having some good days in PT, but she really hates having Ankle-Foot Orthotics AND de-rotation cables. She is usually angry by lunchtime and begging you to take them off. Never underestimate her ability to communicate her needs. She is loud and clear as she takes your hand and places it on her braces.
When she is not in therapy or eating, she is in the playroom. The ladies in there have structured activities including art, music, and even circle time. The kids also have some free play. I sincerely appreciate these professionals and all they do to make Kaydence Grace giggle. She has much better days because of them.
She is currently up to eating six ounces of solid foods and six ounces of milk mixed with a concentrated amount of Carnation Breakfast Essentials at each meal. Her face is filling out, her tummy is filling out and she has energy to do all of the other things she needs to do. Those of you who don't see her regularly wouldn't understand how bony her little body was before we came here. She wasn't starving to death, but she wasn't eating nearly enough to help her grow and develop correctly. We are on a much better path now. Today they began treating her to feed herself. This process will ultimately be slower than the rest I think. She just likes being tended to. However, she is really enjoying drinking from a glass. So much, in fact, that she grabbed my glass of water over a bottle with a bottle nipple on it! That is a big deal!!!
Last week was Thanksgiving, and the only day we didn't go to therapy was on Thanksgiving Day. Tommy, Wade and Abigail flew to see us. They arrived Tuesday evening and left out Friday morning. When they came in I don't think Kaydence could have been more excited! She hugged and hugged all three. She slept with Wade at night, but we had to put Abigail in the bedroom because Kaydence really likes to heap the tough love on Abigail. She will crawl over on her and grab her by the hair no matter the hour! Tough for Abigail, shrieks of laughter for Kaydence. I'm not sure how to address this, but I keep thinking that surely she will grow out of this.
Wednesday morning we left for therapy as usual, while the older crew did some sightseeing. A one-bedroom apartment cannot contain the Neyland family very well. So the big kids and Tommy went to see Camden Yards, home to the Orioles. At lunch I left my mom and Kaydence at therapy and went to see the kids and Tommy and spend some time with them. We went to Ft. McHenry, the location of the battle that inspired The Star Spangled Banner. It was a super interesting tour. That morning it was nice and warm in Baltimore, so Wade was wearing shorts like he was at home, I warned him to change into warmer clothes before we left and he insisted he was fine. About two o'clock that temperature dropped into the 30s! So picture him in athletic shorts outside at Ft. McHenry. Yep. He kept telling me, "My legs aren't cold, it's my face and head!" Sure Wade. Sure. I wound up buying two American Flag beanies for my kids. It was really cold and we were there as it was getting dark. I don't think I've ever waited so long for an Uber to arrive, but when it got there we were so thankful to see that driver! We also took the whole family to see Coco that night. Kaydence seemed to enjoy it. I personally cannot wait for it to be released so I can watch it over and over again.
So Thanksgiving Day, we piddled around the apartment that morning as Tommy and I realized that we should have rented a car for the day. Oops. No rental service was open except those at the airport and they were all out of cars. Our destination for Thanksgiving Dinner was the Schneider home in Alexandria, Virginia. Tanya Jeitz Schneider is the sister of our good buddy Jason Jeitz. She was so kind to invite us to her home. As Tommy explored car rentals, I looked at train and metro schedules. The cost was similar to just calling an Uber, so we opted for the Uber.
I realize some reading this may not be familiar with Uber. It's kind of like a taxi service, but instead of a yellow cab, someone is using their personal car to tote you around. You can arrange for different sizes of vehicles, with larger rides costing more. We had been taking Ubers that could fit us, but when the one showed up to take us to Tanya's house...let's just say we could fit as long as we didn't breathe much. Now Abigail has an issue with migraine headaches just like her momma and she had complained of one earlier that day. We gave her a coke and she didn't say much else. As we rode down the streets of Baltimore I realized that our driver was pretty heavy on the breaks. Then heavy on the gas. WHEW! I felt like I was in a seatbelt commercial! Start. Stop. Start. Stop. Abigail said, "Momma, my head really hurts." I could see that glassy pained look in her eyes. Oh great. She is going to be sick. I smiled a proud smile inside as I always pack a plastic bag in Kaydence's things and I gave Abigail a plastic grocery bag. I told her if she gets sick, to make sure to get it in the bag. There. Problem solved. I eased my butt around in the seat while squishing my poor mother up next to Kaydence's car seat. Then it happened. Abigail threw up. But she has a bag...it'll be okay. Wade was beginning to lament sitting right beside her. I again wedged myself around to discover that she basically missed the bag and vomited right down the edge of the seat, getting on the inside legs of her jeans and shoes and in the floor of the poor unsuspecting Uber driver's car. I can't remember exactly how I broke the news to the driver, but when he finally understood it was in his car, he was all, "Whaaat? Really?!" And then he searched for a gas station. It took a few minutes to find one because first of all, there aren't many on that stretch of road, and second, traffic was stopped due to a wreck, and there was a lot more stopping and starting and it was pretty unbearable even for me! Wade was practically hugging the opposite side of the car seat and continued to let us know how much he did not appreciate riding with Abigail and the puke. I tried so hard to reach over the back of the seat but couldn't wedge my obese self over the seat enough without causing my mom harm.
We finally made it a very basic gas station. The kind of station where the attendant is locked away behind a bullet proof glass. We had to walk upstairs to get to the bathroom. I cleaned Abigail and Tommy was in charge of the car. As we got to the bathroom, I realized a big dilemma in all of the "we are environmentally friendly" because there were no paper towels. I grabbed a wad of cheap gas station toilet paper and wet it and started wiping down Abigail. It. Shredded. Everywhere. Just shredded and basically melted away. I sent Wade for paper towels. None. We finally got paper towels from outside by the gas pumps. It was enough to modestly wipe her off, but it wasn't super. The driver was so kind and bought Abigail a banana and a bottled water because he felt like she needed the potassium. She ate half of it and drank the water. As we piled back in the car, this time, I was in the back with Abigail AND she made ME sit on the side she had vomited on! I just gritted my teeth and kind of blocked my nose with my lips. No matter how clean it was, it still smelled. We finally made it to Tanya's house and tipped the poor man well so he could go detail his car.
Dinner was wonderful. We visited and ate. Then ate dessert. Relaxed. It was perfect. I am so thankful that we had a kind family to host us. I am thankful for a very understanding driver. I am thankful the car that took us back to Baltimore was a little bigger! Ha!
Friday morning we all left at the same time, in different Ubers. I thought Kaydence might seem sad that evening when they weren't home with us, but I think she might have been a little grateful for our normal living arrangements. That brief visit was the perfect pick me up for all of us. It gives some extra oomph until we see each other again.
This week marks the halfway point of the program. We have had some of the sweetest cards, even cards from churches we aren't members of. We love the mail. We are so appreciative of the prayers going up on our behalf. Regardless of the interruption of our normal lives, this journey will hopefully equip Kaydence to be more independent. And that is a blessing.
Speech and OT can address lots of issues, but for Kaydence, Speech and OT both focus on oral motor skills and acceptance of new textures. OT also works on self-feeding skills. We are making slow progress here, but we will make more progress before we leave. We will never again have the opportunity for such an intensive workout so many days in week, but I sure wish she could. I wish we could have had much more therapy when she was younger and maybe we wouldn't be so far behind. I also feel like we are starting over on the texture acceptance because we were grinding up cheerios, puffs, and crackers when we went to Dallas for therapy, but here we are.
Physical therapy is trying to help Kaydence learn to walk with her new cables that rotate her feet our correctly. Every single time I strap those on her, I can only think about the movie Forrest Gump. I have even told her those are her new magic shoes and they will take her anywhere. She is learning and having some good days in PT, but she really hates having Ankle-Foot Orthotics AND de-rotation cables. She is usually angry by lunchtime and begging you to take them off. Never underestimate her ability to communicate her needs. She is loud and clear as she takes your hand and places it on her braces.
When she is not in therapy or eating, she is in the playroom. The ladies in there have structured activities including art, music, and even circle time. The kids also have some free play. I sincerely appreciate these professionals and all they do to make Kaydence Grace giggle. She has much better days because of them.
She is currently up to eating six ounces of solid foods and six ounces of milk mixed with a concentrated amount of Carnation Breakfast Essentials at each meal. Her face is filling out, her tummy is filling out and she has energy to do all of the other things she needs to do. Those of you who don't see her regularly wouldn't understand how bony her little body was before we came here. She wasn't starving to death, but she wasn't eating nearly enough to help her grow and develop correctly. We are on a much better path now. Today they began treating her to feed herself. This process will ultimately be slower than the rest I think. She just likes being tended to. However, she is really enjoying drinking from a glass. So much, in fact, that she grabbed my glass of water over a bottle with a bottle nipple on it! That is a big deal!!!
Last week was Thanksgiving, and the only day we didn't go to therapy was on Thanksgiving Day. Tommy, Wade and Abigail flew to see us. They arrived Tuesday evening and left out Friday morning. When they came in I don't think Kaydence could have been more excited! She hugged and hugged all three. She slept with Wade at night, but we had to put Abigail in the bedroom because Kaydence really likes to heap the tough love on Abigail. She will crawl over on her and grab her by the hair no matter the hour! Tough for Abigail, shrieks of laughter for Kaydence. I'm not sure how to address this, but I keep thinking that surely she will grow out of this.
Wednesday morning we left for therapy as usual, while the older crew did some sightseeing. A one-bedroom apartment cannot contain the Neyland family very well. So the big kids and Tommy went to see Camden Yards, home to the Orioles. At lunch I left my mom and Kaydence at therapy and went to see the kids and Tommy and spend some time with them. We went to Ft. McHenry, the location of the battle that inspired The Star Spangled Banner. It was a super interesting tour. That morning it was nice and warm in Baltimore, so Wade was wearing shorts like he was at home, I warned him to change into warmer clothes before we left and he insisted he was fine. About two o'clock that temperature dropped into the 30s! So picture him in athletic shorts outside at Ft. McHenry. Yep. He kept telling me, "My legs aren't cold, it's my face and head!" Sure Wade. Sure. I wound up buying two American Flag beanies for my kids. It was really cold and we were there as it was getting dark. I don't think I've ever waited so long for an Uber to arrive, but when it got there we were so thankful to see that driver! We also took the whole family to see Coco that night. Kaydence seemed to enjoy it. I personally cannot wait for it to be released so I can watch it over and over again.
So Thanksgiving Day, we piddled around the apartment that morning as Tommy and I realized that we should have rented a car for the day. Oops. No rental service was open except those at the airport and they were all out of cars. Our destination for Thanksgiving Dinner was the Schneider home in Alexandria, Virginia. Tanya Jeitz Schneider is the sister of our good buddy Jason Jeitz. She was so kind to invite us to her home. As Tommy explored car rentals, I looked at train and metro schedules. The cost was similar to just calling an Uber, so we opted for the Uber.
I realize some reading this may not be familiar with Uber. It's kind of like a taxi service, but instead of a yellow cab, someone is using their personal car to tote you around. You can arrange for different sizes of vehicles, with larger rides costing more. We had been taking Ubers that could fit us, but when the one showed up to take us to Tanya's house...let's just say we could fit as long as we didn't breathe much. Now Abigail has an issue with migraine headaches just like her momma and she had complained of one earlier that day. We gave her a coke and she didn't say much else. As we rode down the streets of Baltimore I realized that our driver was pretty heavy on the breaks. Then heavy on the gas. WHEW! I felt like I was in a seatbelt commercial! Start. Stop. Start. Stop. Abigail said, "Momma, my head really hurts." I could see that glassy pained look in her eyes. Oh great. She is going to be sick. I smiled a proud smile inside as I always pack a plastic bag in Kaydence's things and I gave Abigail a plastic grocery bag. I told her if she gets sick, to make sure to get it in the bag. There. Problem solved. I eased my butt around in the seat while squishing my poor mother up next to Kaydence's car seat. Then it happened. Abigail threw up. But she has a bag...it'll be okay. Wade was beginning to lament sitting right beside her. I again wedged myself around to discover that she basically missed the bag and vomited right down the edge of the seat, getting on the inside legs of her jeans and shoes and in the floor of the poor unsuspecting Uber driver's car. I can't remember exactly how I broke the news to the driver, but when he finally understood it was in his car, he was all, "Whaaat? Really?!" And then he searched for a gas station. It took a few minutes to find one because first of all, there aren't many on that stretch of road, and second, traffic was stopped due to a wreck, and there was a lot more stopping and starting and it was pretty unbearable even for me! Wade was practically hugging the opposite side of the car seat and continued to let us know how much he did not appreciate riding with Abigail and the puke. I tried so hard to reach over the back of the seat but couldn't wedge my obese self over the seat enough without causing my mom harm.
We finally made it a very basic gas station. The kind of station where the attendant is locked away behind a bullet proof glass. We had to walk upstairs to get to the bathroom. I cleaned Abigail and Tommy was in charge of the car. As we got to the bathroom, I realized a big dilemma in all of the "we are environmentally friendly" because there were no paper towels. I grabbed a wad of cheap gas station toilet paper and wet it and started wiping down Abigail. It. Shredded. Everywhere. Just shredded and basically melted away. I sent Wade for paper towels. None. We finally got paper towels from outside by the gas pumps. It was enough to modestly wipe her off, but it wasn't super. The driver was so kind and bought Abigail a banana and a bottled water because he felt like she needed the potassium. She ate half of it and drank the water. As we piled back in the car, this time, I was in the back with Abigail AND she made ME sit on the side she had vomited on! I just gritted my teeth and kind of blocked my nose with my lips. No matter how clean it was, it still smelled. We finally made it to Tanya's house and tipped the poor man well so he could go detail his car.
Dinner was wonderful. We visited and ate. Then ate dessert. Relaxed. It was perfect. I am so thankful that we had a kind family to host us. I am thankful for a very understanding driver. I am thankful the car that took us back to Baltimore was a little bigger! Ha!
Friday morning we all left at the same time, in different Ubers. I thought Kaydence might seem sad that evening when they weren't home with us, but I think she might have been a little grateful for our normal living arrangements. That brief visit was the perfect pick me up for all of us. It gives some extra oomph until we see each other again.
This week marks the halfway point of the program. We have had some of the sweetest cards, even cards from churches we aren't members of. We love the mail. We are so appreciative of the prayers going up on our behalf. Regardless of the interruption of our normal lives, this journey will hopefully equip Kaydence to be more independent. And that is a blessing.
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