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August 24, 2002
March 2002
March came and so did Jaida’s birthday. She was getting over another bug so we did not have a party. I did not want to risk getting all her cousins sick. Steve’s brother has a SIL that has twin boys. They were born the day before Jaida at the same hospital and we have always attended each other’s parties and such. We went to the boys’ birthday party one rainy Saturday and I told everybody how Jarod had just been in the hospital two weeks earlier. We ate hot dogs and cake and soon it was time to go. That night, Jaida woke up vomiting. Steve went to her room when we heard her coughing and choking. After he cleaned her up and came back to bed he asked what she had eaten at the party. He commented that “black stuff” had been all over the sheets and her. I said maybe it was the chocolate cake.
The next day, the vomiting continued. By Monday, the severe diarrhea started. We couldn’t tell if she was doing #1 or #2 every time she went to the bathroom. I took her to Dr. Simon and he prescribed Phenergan suppositories since she was still throwing up four or five times a day. He said it looked like Rotavirus but the only test was a stool culture and there was no point in that. We went home to wait it out. By Friday, she was no longer vomiting or having diarrhea but the stomach cramps still stopped her in her tracks.
Of course, Jarod got this one too. He had lost a ton of weight from the RSV and he was not able to put it back on before he was throwing up again. Even after he recovered from RSV he no longer wanted to nurse. We had been on the formula merry-go-round before finally settling on Carnation Good Start. I had put him back on Prilosec and Bethanecol until his stomach adjusted to the switch. Once again, my poor baby had to exist on Pedialyte. Jarod was limp like a rag doll and he stopped babbling again. I was worried about the possible damage to his milestone progress. After the RSV he had to relearn crawling. Now we were back where we started. My mom let us sleep in her bed so I could be closer to the kitchen and we wouldn’t disturb Steve all night. Jarod could only drink about an ounce at a time and he woke frequently. I was a zombie at work for about two weeks. I guess his weakened body took longer to fight the virus without my antibodies. I could only sit back and watch my baby waste away.
Finally by the third week in March both kids were well again. Jarod was super skinny and he was unable to pull up. His head was weighing him down. We went to Children’s in Birmingham for his sweat test. The nurse was so surprised she had to keep checking the scale. He only weighed about 15 lbs 10oz at 27” long. Dr. Grad was so bothered that he asked tons of questions about his diet and food intake. When we explained that he didn’t eat solid food, Dr. Grad asked if we would wait for the nutritionist to come and talk with us. I told Dr. G that Dr. Simon had asked the nutritionist at BS to stop by during his last hospital stay and her only suggestion was to keep offering him food. The Children’s nutritionist took notes and left to make a phone call. She came back with instructions on how to mix his formula to make it more concentrated. We did that for about three weeks and Jarod’s face and body started to fill out again. Thank God, Jarod’s sweat test was negative.
At the end of the month we moved into the house that Steve grew up in. We thought the sale on our old house was a done deal but our putz of a realtor called the night before we were supposed to close and said it was off. I was devastated. How would we manage upkeep on two houses? We had good neighbors and I knew they would report anything suspicious right away. I was angry that we would have to keep paying on a house we didn’t live in. My in-laws agreed to hold off on our original deal and wait until we sold our old house before we starting paying them. We really didn't have mucj choice.
April 2002
It was checkup time for both kids. I was happy to see that Jarod was up to 16 lbs 12 oz and 27 1/4” tall. I told Dr. Simon about our trip and Jarod’s negative sweat test. Dr. Grad had also informed me of a feeding clinic that worked with children needing help with eating. I had turned in the paperwork (it is funded by a state agency) but I needed him to send an order for it as well. As usual, Dr. Simon was happy to oblige. The great thing about him is his willingness to admit when something is past his scope of expertise. Anytime I ask for his help with a referral he is more than happy to do it. The intake nurse at the clinic warned me that the earliest appointment would probably be July. I figured we could hold on until then and what else could I do?
At Dr. Grad’s suggestion, we saw Dr. Jakes again for more allergy testing. Of course it was all negative. She said that positives don’t always show up at his age. She felt that since he did not have a serious eczema flare up during the winter, he would more than likely outgrow it by age two.
Jaida and Jarod got sick again. They both had colds that seemed to linger. I took them in and Dr. Simon thought they both had a sinus infection. We got scripts for Zithromax and off we went. A few days later Jaida’s ear started to drain. I took her back and we saw Dr. Glover. He prescribed Bactrim and a drop for her ear. I looked at the prescription and had the urge to kick myself. When we moved, I had thrown away a bottle of the same stuff. I figured with tubes in her ears we wouldn’t need it. I paid $40 for my stupidity.
May 2002
Unfortunately, Jaida’s ear would not clear up and we had to go back to see Dr. Evans, her ENT. He switched her to Omnicef and soon she was better. However, at the end of the month she had drainage again and we went back for more antibiotics. They were running out of choices so we got something called Vantin this time. My mom said she had no idea there were so many different kinds for kids. When I was little there was Amoxicillan and that was basically it.
After watching Jarod twitch in his sleep I got worried. I made an appointment to see Dr. Corbier and get an EEG done. Thankfully it was normal. Jaida saw Dr. Corbier a few weeks later. After reviewing her chart he said we should go to twice a day on the Topamax. I reminded him about what had happened when we tried that before. He said she needed to be on something twice a day for the level of seizure activity her EEG had shown in December. He told me about a new drug he had seen in a conference that he had just returned from. It was called Lamictal and I would have to split and crush it because it was a chewable tablet. She was to get 1/2 a tablet twice a day. After the first day, Jaida was like a different child. She did need Melatonin supplements to sleep at first, but she quickly adjusted. Her sweet disposition only lasted a week and we were back to “problem child”, just like the movie. I was ready to move on with summer and get to Jarod’s clinic appointment.
June 2002
June was a relatively quiet month. Jaida saw Dr. Corbier to follow up on the new medicine. He decided to do an IGg blood allergy test. We were shocked to see that she showed sensitivity to 26 different foods. On a scale of 1 to 4, she had a 3 (yeast) and a few 2’s (soy and wheat). The rest were 1’s and not really her favorites. I started to research a gluten free diet again and soon became overwhelmed. (After Jaida's ASD diagnosis, I tried to do it but Jarod was still so little and sick. It was more work than I was capable of at the time.) In the end, I went to several health food stores and found a few tasty substitutes to start with. A total switch would be too hard for all of us. I felt like maybe we could handle it after all.
July 2002
The day of Jarod’s feeding clinic appointment I didn’t go to work. It was at 8:30 and I would only be at work for about 15 minutes and then I’d have to leave so I thought why bother? I took Jaida to school at her regular time and then I went home to pack what we needed for the clinic. They had instructed me to bring a sample of a regular meal for him and also something that he had trouble eating. That was easy. I took a jar of stage one pureed sweet potatoes and a jar of toddler sized fruit dices. I had no trouble finding the building using the directions a nurse had given me. I loaded up the stroller and headed inside. We were the first appointment and the social worker, Teresa, met us in the waiting area. She asked me some questions for a brief survey and then we went to meet the rest of the team. There was Melanie the nurse that did my intake when I returned the paperwork. Terry, an occupational therapist and two dieticians, Connie and Mary Ann rounded out the group. We all introduced ourselves and then we got to work. Each person fired off questions and soon I felt like I was on Law & Order. I tried to answer them as honestly and accurately as I could.
They watched as I fed Jarod his sweet potatoes. They asked about his food intake at home. Being in a new place was so exciting, he wouldn’t finish his food. Then again, he usually didn’t have sweet potatoes at 9:00 in the morning. Terry put him in the highchair and opened the jar of fruit dices. I told her that he had trouble swallowing anything that wasn’t pureed. She put some fruit on the tray and true to form; Jarod acted like it was dog poop. He wouldn’t even touch it. She asked somebody to pass her a glove and she attempted to feel around in his mouth. I warned her to be careful. She brushed his gums with her finger and talked softly to him. Jarod had a look on his face that reminded me of a deer caught in head lights. She said he was okay with her stroking his cheek but violently resisted any probing in his mouth. She went back for another feel and hit the wrong spot. Orange goop spewed onto the tray and down the front of Jarod’s bib. Terry looked at the rest of the group and said, “I see what mom is talking about.” We cleaned Jarod up and she continued her torture. Jarod cried and whimpered but she persisted.
While she played around with his face and lips she talked to me. “He is hyper-sensitive and he really needs OT to help desensitize his mouth. He will never learn to accept solids without it,” she said. I had shared the story of Jaida not eating solid food until she was almost two and a half. They asked lots of questions about Jaida and I watched tensely while Terry kept probing Jarod’s mouth. She managed to trigger his gag reflex a few more times and she kept talking to me. “I would strongly recommend going back to Dr. Cavendar to reevaluate his reflux,” she said. “He really shouldn’t be throwing up that easily, and I wonder if he doesn’t need something stronger for stomach motility,” she said as she took off her glove. Jarod was drooling and frozen in dazed stare. Terry kept stroking his cheek as she commented that he looked scared to death of what she might do to him next. His breathing was loud and I could tell he was having an adrenaline rush from the fear. I couldn’t hold it back any longer and I burst into tears. Mary Ann rushed to my side with a box of tissues and tried to reassure me. “You’ve done a great job keeping him nourished but he needs to start OT right away.” I wiped my eyes and felt really dumb for crying in front of strangers. They acted as if it had never happened. Melanie asked if I could bring Jaida to a neuro clinic next Friday. She said Dr. Corbier would be there and they could start a file on her with CRS or Children’s Rehab Services. We might be able to get her some OT if she needed it and maybe some other services. He only came once a month so it had to be Friday. I agreed and answered more questions about Jaida while Melanie took notes.
Mary Ann had left the room and when she came back she asked about his formula intake. I named each feeding time and how much he drank. She said he needed more calories. She and Terry suggested adding Pediasure to his bottle to boost his calories and gradually weaning him from formula altogether. They called Jennifer at Easter Seals and asked her to come over and meet us. When she got there, we were almost ready to leave. Terry gave her a quick summary and Jennifer inquired about our insurance. She frowned when I said we had Blue Cross. Terry looked shocked when Jennifer said they wouldn’t cover it. They talked about billing CRS for it and Jennifer said that would probably be our only option. Jennifer wrote down my work number and promised to call me to schedule Jarod’s OT evaluation.
Jaida saw Dr. Corbier on the 26th at the CRS neuro clinic. I went to pick her up from school early and she had wet her pants and shoes. Great! I had to stop at a Family Dollar (a chain that is a combo of Wal-mart and dollar tree) and get her a cheap pair of sneakers. We made it in time to wait an hour and a half to be seen. The social worker, also named Kim, for this clinic was an old friend from high school and we got caught up while I waited. Jaida played with the toys and another little girl. I wasn’t aware that we would be doing a full physical/health assessment until the nutritionist called us to her office. We talked Jaida’s picky eating habits and the recent allergy test results. They said I should be letting her drink some kind of juice since she didn’t like fruit. I told them Dr. Corbier had advised against fruit juice, even the unsweetened variety. They gave some more ideas and then we went back to wait some more.
A little later, a petite lady with silver hair called my name. She asked if we would come back and talk with her. When we got into her office, she introduced herself as Roan Frederick, a speech and language pathologist. I told her about the past conversations Dr. Corbier and I had about her inability to communicate some things. She asked Jaida some questions and like always, I had to remind her of the answers. Roan asked, “Do you like to watch TV?” Jaida said yes. “What’s your favorite thing to watch?” Roan asked. Jaida looked at the floor and said, “I don’t know.” I quietly said, “What do you watch every day when we get home?” Jaida’s eyes lit up and she smiled, “Dinosaurs!” Roan smiled and gave me a knowing glance. She asked a few more things, like ‘do you have any brothers or sisters?’ and Jaida answered yes. “Which do you have?” Roan asked. “A sister’” Jaida answered. I gently corrected her, “No, you have a brother.” “Oh, a brother,” Roan said enthusiastically. “What’s his name?” Jaida smiled and said, “Jarod.” Roan made some notes and said we could go back to the waiting area and she thanked Jaida for talking with her. I noticed the clock said 5:15 and I wondered how much longer we would have to wait. Kim said we could go to an exam room for a change of scenery but there were two patients ahead of us. I relented and we went to a small room with ancient looking equipment.
After about 45 minutes, Dr. Corbier came in followed by Roan. We chatted briefly about her talk with Jaida and how she responded to the questions. Dr. Corbier looked at Roan said we should probably do a full speech evaluation. Roan looked uncomfortable. She was working in her capacity as a CRS employee and she really didn’t want to solicit me for a private job. She wanted me to understand that CRS would not pay for it and I would have to pay out of pocket since Blue Cross didn’t cover it either. I assured her that I understood and I was grateful that she wanted to do the evaluation. She seemed so eager to help us and I could tell she was sincere. She went to get her appointment book and Dr. Corbier finished his exam. The clock in my car said 6:30 when we left to go home. We were both starving and tired.
I scheduled the evaluation for August 2nd. I was going to be off anyway because my brother was graduating from college. I was sad that I would not be able to go but Jarod was having his OT evaluation on the 30th so I couldn’t take any more time off. I knew everybody would understand. I had already expressed concern about the kids being able to sit thru the ceremony in the first place and it looked as if we would be staying home anyway. Now I would have to take Jarod with us to the speech evaluation. Oh boy!
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