1st Clinic of The Year
Yesterday Kennedy and I were up in Cincinnati again. We started the day off with a renal ultrasound, followed by a VCUG and Spina Bifida Clinic. The main purpose of the VCUG was to see if Kennedy's bladder is refluxing urine into her kidney's when her bladder is full.
This was our first clinic since Kennedy's cord dethering/cyst removal and shunt surgeries. One of the highlights was getting to see our Fetal Care Center Case Worker, Erin. She was shadowing our Social Worker for the afternoon. This was the first time she'd seen Kennedy with her walker. I know I've said this before, but every single person who helped us through the decision to have fetal surgery will forever have a special place in our hearts.
The urodynamics test from 2 weeks ago and the VCUG showed that Kennedy is still not completely voiding her bladder on her own. The Urologist did say that her bladder does look much better than it did during the renal ultrasound in August and she's not refluxing into her kidneys. However, we will continue to cath her during the day and she will remain on the medication that keeps her bladder from having uncontrollable spasms. The VCUG also showed a lot of back up in Kennedy's bowels. She's being placed on an additional medication to help clear her bowel tract and prevent constipation.
The biggest concern of the day was how much Kennedy is drinking during the day. Her catheter outputs are lower than the Urologist would like them to be. We've added "cup holder" baskets to Kennedy's walker. Our plan is to keep a cup of water in a cup holder at all times and offer her milk with her meals and snacks. The doctors also feel this will help relieve some of Kennedy's bowel issues as well.
The Physical Therapist Doctor ordered another Manual Muscle Test now that we are so far out from surgery. This will allow them to see what function has improved since her surgeries and provide a baseline, should something go array in the future. She was very impressed with how well Kennedy uses her walker. Poor Kennedy thought she was getting to leave when they lured her into the hallway to watch her walk, only to make her come back into the exam room.
We discussed preschool transition with the Developmental Department. My head is spinning because I have no clue where all of this time went. I'd always assumed Kennedy would be going to preschool later because of where her birthday fell. Unfortunately, the Early Intervention Program we receive her therapy services through ends the day she turns 3. We are so thankful that our local school district has multiple preschools for children with special needs. Tomorrow we meet with our Early Intervention Coordinator for our quarterly meeting. We will be scheduling meetings with the school system to begin this process. It's also bittersweet because we will be losing our two therapists who have been nothing short of amazing. They both deserve so much credit for guiding and pushing Kennedy to do the things she's doing right now.
On a personal note, while in clinic I received texts and calls from family that my Great-Aunt Ike (pronounced I-key) passed away yesterday morning unexpectedly of a heart attack. I don't have a lot of memories of Aunt Ike, but I will never forget the last time I saw her. She was such a special person to so many people. Anyone who knew her will surely never forget her.
This was our first clinic since Kennedy's cord dethering/cyst removal and shunt surgeries. One of the highlights was getting to see our Fetal Care Center Case Worker, Erin. She was shadowing our Social Worker for the afternoon. This was the first time she'd seen Kennedy with her walker. I know I've said this before, but every single person who helped us through the decision to have fetal surgery will forever have a special place in our hearts.
The urodynamics test from 2 weeks ago and the VCUG showed that Kennedy is still not completely voiding her bladder on her own. The Urologist did say that her bladder does look much better than it did during the renal ultrasound in August and she's not refluxing into her kidneys. However, we will continue to cath her during the day and she will remain on the medication that keeps her bladder from having uncontrollable spasms. The VCUG also showed a lot of back up in Kennedy's bowels. She's being placed on an additional medication to help clear her bowel tract and prevent constipation.
The biggest concern of the day was how much Kennedy is drinking during the day. Her catheter outputs are lower than the Urologist would like them to be. We've added "cup holder" baskets to Kennedy's walker. Our plan is to keep a cup of water in a cup holder at all times and offer her milk with her meals and snacks. The doctors also feel this will help relieve some of Kennedy's bowel issues as well.
The Physical Therapist Doctor ordered another Manual Muscle Test now that we are so far out from surgery. This will allow them to see what function has improved since her surgeries and provide a baseline, should something go array in the future. She was very impressed with how well Kennedy uses her walker. Poor Kennedy thought she was getting to leave when they lured her into the hallway to watch her walk, only to make her come back into the exam room.
We discussed preschool transition with the Developmental Department. My head is spinning because I have no clue where all of this time went. I'd always assumed Kennedy would be going to preschool later because of where her birthday fell. Unfortunately, the Early Intervention Program we receive her therapy services through ends the day she turns 3. We are so thankful that our local school district has multiple preschools for children with special needs. Tomorrow we meet with our Early Intervention Coordinator for our quarterly meeting. We will be scheduling meetings with the school system to begin this process. It's also bittersweet because we will be losing our two therapists who have been nothing short of amazing. They both deserve so much credit for guiding and pushing Kennedy to do the things she's doing right now.
On a personal note, while in clinic I received texts and calls from family that my Great-Aunt Ike (pronounced I-key) passed away yesterday morning unexpectedly of a heart attack. I don't have a lot of memories of Aunt Ike, but I will never forget the last time I saw her. She was such a special person to so many people. Anyone who knew her will surely never forget her.
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