Kelli's Story
1/16/07 - Kelli had an Occupational Therapy Evaluation and a Speech Evaluation at Kluge.
2/1/07 - Kelli saw a Pediatric GI. He gave Kelli an antacid to take daily which seemed to make her more comfortable. He also described the two types of G-tubes that we would have to choose from when the time came for her to have one surgically implanted.
2/14/07 - Kelli began taking a ½ tablet of Valium at night to help with her muscle spasms.
Kelli saw a Pediatric Orthopedic doctor at Kluge on 2/19/07. He examined her before sending her to have her legs cast for braces.
February 2007- It was so difficult watching the bubbly, happy-go-lucky little girl I once knew become unable to do many of the things that she once did very easily each day as a two year old.
Kelli began having difficulty using a spoon to get food into her mouth and holding her sippy cup without dropping it. She began to drool off and on throughout the day as well. Kelli was unable to walk at this point. She had no desire to use a walker or attempt to walk with you holding her hands. When she wanted to get somewhere, she would crawl or seek to be held.
Kelli continued to have very traumatic episodes riding in her carseat - screaming, crying and clawing her seat to get out until we arrived at our destination. Upon arrival she was very distraught, her face blood red, her arms and hands very obviously trembling and shaking. We don’t understand what caused the discomfort - perhaps it was tied into muscle spasms. We were never able to discover anything that brought her any comfort with this except people physically holding her on their lap in the car.
Kelli began having more and more muscle spasms at night which were interfering with her sleep. She was on medication to try to relax her muscles but she was still having difficulty sleeping through the night.
During the day, Kelli cognitively and socially interacted with us as she always had; however, she was very weak and tired each day. Even when she didn’t sleep well at night and was very tired during the day, she couldn’t nap. With everything that was happening to her, we were very thankful that she was doing as well as she was!
3/20/07 - As time went on, Kelli continued to regress quickly. She now sat in a crouched position with her head held back. She had difficulty with head control. While sitting, her balance was unsteady and she fell over easily. Kelli had even greater difficulty using her hands to hold her sippy cup, grasp an item, use a spoon, etc. I know that it had to be so frustrating for her to try so hard and not be able to do the things that she used to do. She continued to have no desire to walk or stand. She crawled to get to where she wanted to go but she didn’t even do that very much.
Her stander arrived on 3/9/07. It was a big contraption in which she was secured into and it literally made her stand up for periods of time. Kelli was fitted for her leg braces on 3/12/07. She was supposed to wear them when she attempted to walk, was in her stander and when she was on the floor not trying to crawl around. She did okay with them, although she really disliked wearing them. She really enjoyed helping me undo the Velcro to take them off!
Kelli had a Barium Swallow Study at UVA on 3/13/07. I had requested this because almost every time she drank liquids, she would cough and cough. Because she would not swallow the barium, we weren’t 100% sure that when she drank she was aspirating (this means that the liquid was going into her lungs), but just in case we began adding Thicken Up to her liquids. She began to drink much better and wanted to drink a lot more milk than she had previously. Although she was still eating regular food, she swallowed most of it with very little chewing. She had her third aquatic therapy in the pool with her physical therapist. She really enjoyed this! It was great to see her with a smile on her face as she received therapy which was helping her at the same time.
She continued to take Valium at night to help ease her muscle spasms, but it didn't necessarily help her sleep. Some nights it took a very long time to get her to sleep. Occasionally, she would sleep through the night while other nights she would awaken at 3 a.m., 4 a.m. or 5 a.m. and not be able to go back to sleep. There were some nights, and even days, that I had to give her additional Valium because of the muscle spasms. This really made her groggy and weak.
The carseat discomfort continued, so we didn't travel far from home - only to appointments or church. Kelli was still very social and playful with us but she seemed to be using less words. We were very thankful for each day that we had with her and for the condition that she was still in!
In April 2007, Kelli was unable to sit up independently and she had lost head and neck control. The only position she could find some sort of comfort in was sitting sideways on your lap, bent over in a C position. Her drooling increased and she had more of a desire to put objects in her mouth. The muscle spasms became more intense and more frequent and were now in her lower and upper body. Kelli’s speech rapidly decreased. She tried to speak a few words but it seemed like it was very difficult at times and she put forth so much effort. When you spoke to her, you had to allow her a long wait period to respond. With her level of pain she was very irritable, cried often, was extremely restless and uncomfortable, was very rigid at times, and was often difficult to console.
As April went on, Kelli was losing her desire to eat or drink and she began to get constipated. On 4/13/07, she was admitted to UVA hospital to have her feeding tube inserted. Kelli was in the hospital for six days. She stayed longer than expected due to the amount of pain she was in, side effects from the anesthesia, infection, and concerns that she may have been having absence (grand petit mal) seizures. She had a prolonged EEG that lasted overnight. Although the doctors said that they were not seizures, she did, at various times, continue to go into short staring trances. Talking to her, touching her, clapping or snapping, would not bring her out of these trances.
During this hospital stay, we began working with a Pediatric Palliative Team to help control and minimize Kelli’s pain.
At this time, we decreased the Valium that she was taking for muscle spasms. March 29th she was started on Neurontin for neuropathic pain. On April 16th she started taking Baclofen, which we hoped would help with the muscle spasms.
On 4/13/07, when Kelli screamed and cried, there were no tears and there was not a wet diaper the entire day. We had really struggled with knowing when to have the feeding tube inserted, God guided the way. We were at peace that our decision was made at the right time (God’s time).
4/21/07 - Kelli was home and learning how to tolerate her feeding tube and all of the poking and prodding that went along with it. We, as a family, were trying to learn how to function with this new way of life. It was hard, much harder than I expected, but as always, we had so many loving people around us that jumped right in to help carry us through!