Well we have been home for just over two weeks now. Cadence has adjusted beautifully. She was so excited to get back to school! She continues to eat very well. Same stuff as before, only better quantities and all meals are eaten to their fullest. (and snacks) She had her first weigh in last week. We will continue to weigh her monthly with her regular pediatrician graphing her development. I was beyond scared! They told us to expect her to have some weight loss when we get home. She no longer has the nose tube; she is off bed rest and running around so it is only natural to drop weight. The results came in and she gained two pounds! Holy cow!! WHAT?! Most certainly not the direction I was expecting. Her spirits are good. She is crawling out of her skin, however. She has been off of the ADHD medication since the beginning of our journey to Portland. I do believe she was misdiagnosed. I do believe her to be more in line with the Aspergers Syndrome. The problem is finding someone to diagnose her. Yesterday alone, as an example, I spoke to 3 clinics. (Do you know how much hold time that was??!) They either cannot see her until August (the earliest of the three) or they do not take insurance. I am quickly running out of options here in the Valley. I will most likely start exploring other states..... again. It will be ok. She is at least healthy. I just don’t like the way she can quickly snap, or decide to take her emotions out on her school mates. The school's need for her to change in order to keep her there last fall is what kicked off the misdiagnosis in the first place. They are already starting to feel the strain of her. I think it is a little better now that she thinks slightly better than she did when she was malnourished. We will just have to see.
Well we have heard the news that we have been waiting to hear since our journeys beginning. We are going home!
Friday, Cadence was relieved of her feeding tube. (Praise the Lord!) Luckily, timing has all worked out. Jon came out to visit us on Thursday with the plans to leave us on Monday. Little did we know that we would get to leave on Monday as well! We sat down with Cadence's Doctor, Dr. O'Toole Friday afternoon. She told us they are no longer concerned about Cadence. These are the things we know. She was admitted into the hospital on March 4th at 46.2lbs. Friday morning she weighed in at 60lbs and has regained her position at the 60th percentile on the growth charts! From this clinic, C has been diagnosed as a "selective eater" It is unlikely to change. As long as C eats enough of the things she will eat, there should be no threat of relapse in weight. She will need monthly check ups from her pediatrician and be placed on the growth chart. She needs between 1600 and 1800 calories a day. Very doable for the things she will eat. We learned quite a bit about the foods she was eating that we can tweak. For example, her peanut butter was reduced fat. Changed. Her milk was 2% and is now whole. We were even able to switch out her beloved Splitz yogurt for whole milk yogurt. As I have said in the past, for me (as a mother) I have never been aware of the actual knowledge of feeding a child. I know that sounds kinda crazy, but I never thought twice about buying syrup that was reduced sugar. I always figured that was a good thing. I am a bit floored at the lack of understanding on my part. What seems now as common knowledge was just irresponsible regular life choices before the last month. Simple, simple stuff completely overlooked. It is my hope in all of this, that if you are a young parent just going through the motions of life, or even someone someday wanting children and you are reading my blog, that you learn from my "mistake". Food is medication. You should know about what things are going into the mouth of your child. Just because you eat it - doesn’t mean your child should.
We will also be looking for a developmental specialist when we get home. We were hoping to see a doctor on Friday, but she ended up coming down with the flu. So we have the name of a woman we can look into which was referred to us while we were here in regards to the question raised of Cadence possibly having Aspergers.
I have a new desire to help others like us. My awareness has grown so much in the past month of the Ronald McDonald house. There are 2 in the valley and I have already sent off an email with questions of how and when I can start volunteering my time. If there is not a RMD house in your area, or you don’t have the time, please consider helping monetarily. NEVER drive or walk past one of the RMD house donation boxes without dropping some spare change (or even some cash) into it. I really don’t know what I would have done without this resource available.
I would also like to thank you, my family, my friends and even the friends of friends or family that have been reading this blog. Thank you to those who sent gifts and care packages. Thank you to those who sent cards. Most of all thank you to those who prayed. Without your prayers, Cadence, Jon and I could not have made this journey. It is because of you we are going home. We love you all so very, very much.
What a weekend!! It started for me on Saturday night. My dad called me at about 9:00 or so. He told me the UPS man was at the RMD house to deliver my birthday present and he couldn’t get in. I was up at the hospital getting Cadence ready to settle down, but I told him I would go as fast as I could. C was hesitant at first of me leaving so fast, but finally agreed to my departure. I moved as quickly as I could in the hopes of seeing the truck and flagging it down if I had to!! I wanted my present!! As I get closer, I notice that there is no truck. Disappointed, I start thinking, "well maybe someone let him in and he’s gone". As I got closer to the dark building I notice next that there is a man standing by the front door holding a light of some sort towards me. I thought to myself, "that’s weird! That guy looks just like my dad!" "He’s even wearing what appears to be a Green Bay Packer shirt!" With the next step I realize IT IS MY DAD!! What an amazing surprise! So many things started adding up from the past few weeks! It was perfect timing.
Sunday morning Dr. Moshtael made a HUGE exception and allowed my dad to come into the hospital and see Cadence! She was also quite surprised. She had that same kind of look I'm sure that I did. The, I know you from somewhere, but you don’t belong in this place, kind of look. Which of course quickly changed to arms out yelling "GRANDPA!!" Sunday was an amazing day. Cadence ate 100% of each and every meal. So Cadence was discharged this morning from the hospital as planned. She went from the hospital across the street to the DTU (Day Treatment Unit). We picked her up at 3 and had a great dinner together in the dining room. She somehow conned Grandpa into sleeping with her tonight. My dad will leave around 4 in the morning. It was a short trip, but boy oh boy was it a GREAT one! The sun was even out on Sunday and I am pretty sure it didn’t rain at all!
Cadence is still getting her feedings at night which I administer. C gets a bit of a kick out of it and calls me nurse mommy. It's a little scary I have to admit and can’t get over the feeling that it’s like taking her home from the hospital after she was born. You get these "instructions" on things to do and you can’t help but feel overwhelmed and like you’re going to mess something important up. Between the medicine, tube feeding and regular feeding, everything is new and different. I am sure we will get through it.
Jon will be here on Thursday! The therapist who specializes in behavioral issues will see Jon, C and me on Friday. She will run a series of questions to test for aspergers. Either way, it will be good to know.
Every time I post a new blog I tell myself that the next one will be done the next day. Then something happens.... I forget! Today is our 1 month anniversary of being in the hospital.
So I apologize for the lengthy intermissions. Cadence will be discharged from the hospital on Monday. She will begin a modified DTU (day treatment unit) at the Kartini Clinic. In the late evenings, weekends and Tuesdays, she will be with me at the RMD house! The doctors have decided to cut things back a bit. Staff wise. They thought a lot was getting lost in translation between the 2 doctors and the family therapist. So now we will be dealing majorly with Dr. Moshtael and Kathy, our family therapist who will help equip us for when we go home with various lessons and plans. Dr. M asked for C's menu and that is what they will focus on feeding her at the DTU. There were too many variables at the hospital to figure out what, if anything else, is going on with C. They don’t know if it’s the food, the handler, both, neither, or anything else when she is there. At the clinic there will be only one food handler and Cadence. This person is a trained therapist in this type of situation. Unlike the hospital where it was a different nurse (sometimes even different throughout the day) every day and their concern is with typical pediatric heath care. They are trained at the hospital to a certain extent on things to look for and calculate the percentages and caloric intakes. There is apparently much more to this than that! (can you imagine?) We are still waiting to find out if the aspergers screen will happen while we are here. I would like to find out as soon as possible so we can move on with life in whatever form that may be. I just hate waiting. Monday afternoon Home Health will be stopping by the RMD house to bring C a pump and show me how to use it. I have to administer her feedings overnight. She will have to keep the tube for a few more weeks. Hopefully soon we can get rid of that silly thing. I should have more info before Monday so I will do my VERY best to get back in here before that!
Well today is the same, but different. Cadence has been moved to a new room. This one void of anything fun on the walls. She can not do art, she can not interact in any of the hospitals games. She can not watch any TV. They are considering taking her books away. Cadence is also, still not eating. She refuses to conform. It is hard to say why. The doctors keep asking her and she keeps on answering that she just doesnt know. I spoke today with the family therapist and got some thoughts out which I had problems conveying before. Here is my frustration. Kartini Clinic, albeit a phenominal resource for young adults struggling with food phobias or different types of anorexia, does not check for anything besides just that. I really had no idea coming into this that is was like that. Anything beyond these diseases, they do not have the resources to treat. They have done zero allergy testing. No screenings for different types of sensorial problems. They have done some narrowing down for us and for that I am greatful, however had I known they would not be looking for these issues, I would have had them done before we came out. It has now been 5 days since I have seen my daughter. She is still on the "behavior modification". Unless she eats 3 meals in a row, I can not see her. She is stubborn and I figured they knew that by now. "A child will not starve themselves" has become one of my most hated phrases I hear people telling parents. They sure as heck will and mine has. You think just taking me out of the equation is going to change that? The child almost killed herself! The doctors here tell me she is a selective eater and there is nothing you can do to change that. But they are only offering her the foods (she may like normally) in a way she doesnt like. She doesnt like the bread (it is not white), she doesnt like the mac n cheese (it is not Kraft), she doesnt like the muffins (they are not blueberry) and so on and so forth. So why is it that we are expecting her to accomplish something they told me minutes before she could not do?! I also asked the therapist that if in a worst case scenario, Cadence was diagnosed with aspergers, would they be treating her in a different method. Her answer? "yes, of course". Basically, the doctors are giving in. Tomorrow I suspect they will tell me what the therapist told me this evening. The team has met and decided to keep Cadence's NG tube in, however either on Friday or Monday they will be discharging her and sending her to the RMD House with me. They changed their minds again. Now they want her to go to the Day Treatment Unit at the clinic, but with the tube... which confuses me since patients are not allowed into the DTU with a tube. She would be on a modified treatment. I dont know what to make of this. Why does it have to be my child to break their record. 100% of children in their program are turned around by the behavior modification. Obviously, if Cadence has been cleared of the two broad diseases they treat, the methods they use will not work. I am just very confused, hurt and wanting answers. I am thankful for a few things. 1. My new friend Sherry. 2. Ruling out more things she is not sick with. 3. She continues to average putting on about a half of a pound a day. (with the tube) 4. Learning to do my research. and finally, 5. to have tools given to me to help her in future meal times. We are still hoping to have the Aspergers screening done as well before we go. It will be good to know either way. I'm sorry to say, you still have to pray! (whoa, that was a lot of rhyming)
We have been here for over three weeks. The staff is not losing hope just yet. New standards are coming into play. This morning Dr. Moshtael informed me that they will be moving Cadence's room so it is closer to the nurses station. They will not have things up on the walls as we had them. they dont want to make her room appealing. She has been without TV and that will continue. She can no longer eat a meal and get me back. She has to go 3 meals, or 24 hours if you will. This morning she was very stubborn according to the nursing staff and Dr. M. She did not eat breakfast.They are thinking about taking away books as well. Dr. M needs to resinate on that because she doesnt like the idea of taking away books, however they need her to be so bored she really really makes an effort to leave. We had about 4 or 5 days in a row where she would eat breakfast but not lunch or dinner. I am not sure what today will have in store since we have started out totally different.
I have made a good friend with a woman here from Georgia who's daughter is in the same boat, if you will, as Cadence. Her daughter is 17. Luckily we have eachother to kind of lean on for support and such. Please keep Sherri and her daughter Shannon in your prayers as well.
The clinic's process includes family therapy. I have met with the therapist acouple of times now. Towards the end of the last session we had she paused and asked if she could be so bold to suggest something. She would like Cadence to be tested for Aspbergers. It is something that more than likely we will have to do when we get back to Arizona as time and resources are limited. She said she was going to talk to a few people though and see what she could do.
Please keep praying, if you dont mind. Thank you
Well here's your report. Basically parent group night went well... lots and lots of different types of eating disorders and lots of different ages and lots of parents! wow.
Cadence's doctors have decided she will not require the DTU (day treatment unit). Slowly I am getting on board with this. Basically they are trying to raise her metabolic rate and keep her from being orthostatic. They are confident that when those things happen, she will continue to thrive based on her selective diet. The plan for now is to keep the NG tube in until she eats at least 80% of each meal consistantly. That in itself is proving to be a problem. She has been averaging about a meal a day. They continue the behavior modification where I have to leave until she eats a meal (80%of it). Since I last updated they have started making her time in the hospital a bit more bland since she doesnt seem to mind too much if I am not there. TV can not be watched unless the meal was eatten. They also take away any activities including art and any "fun" therapies that are allowed (normally) in her room. She is bored bored bored. She is allowed to read and do math. Doesnt seem to mind too much though, as she is still defying eating.
After she completes that stage, they will remove the tube and watch and see.... basically. That too will probably take some time. I am guessing about a week. So a timeline cannot be established since we are at the whim of a child. I guess we will just take things one day at a time.
Not sure what to report. Every day is different. Today she did not eat breakfast but ate lunch, so I came up to the hospital. After I was there for an hour or two it was time for her snack, so out I went waiting for the report. I got sent home. So I will wait till dinner and see if she can do 3 days in a row of eating dinner. Oddly enough, she hasnt done breakfast or lunch for the last few days, but dinner works...
Dr. O'Toole has taken back her television priviledges from whenever she wanted to 9-6. She seemed content and of course, they dont want her content. They would like for her to want to leave. She does, but not enough apparently.
There is a parent meeting at the clinic tonight. (Well there is every Monday night, but I have always forgotten) Tonight I will go and meet some other parents with same, but different problems. It is amazing the people I have met here. I went from feeling like a bad mother who did something to cause this and the only kid I knew like this, to knowing I didnt cause this, it is a disorder and I am not alone. There are picky eaters and then there are selective eaters. Dr. O'Toole has assured me the chances of Cadence eating PB&J for the rest of her life is high. Its hard wired into her. That was hard to swallow. I really thought there was something that could be done. The only thing that can be done is our attitude. Never making Cadence feel bad for her choice of eating. We spent so much time hammering away at her eating other things, that it pushed her away from the few foods she does enjoy. In the scheme of things, we have also been reassured that of all the foods to be selective to, PB&J is not a bad thing.
Well, I gotta get a move on to laugh and cry with some other folks who know exactly what this is all about. Thanks for the read and I will try to update sooner.
Well I am at the RMD House today. Cadence ate about 10% of her breakfast so they have begun "behavior modification". Basically saying she cant see me till she eats at least 85% of a meal. It did not go over so well. She had been warned starting yesterday, so she knew, but it was still extreemly difficult. She was very pale and yelling before I left.
She will try again at lunch. I will get a phone call from her nurse if I can come back.
Not a good day
Well this morning we met with Dr. O'Toole. She ok'd Cadence to eating by mouth in addition to the tube. She informed me that she will allow Cadence to eat on her own today and then tomorrow tell her that if she does not complete a certain percentage of her food that she will be put on behavior modification. Basically meaning I would not be allowed to be in the hospital with her for 3 days. I really hope it doesnt come to that, but I have a bad feeling.... we will just wait and see. Cadence continues to challenge her teachers here at the hospital. She is doing better overall. We have one or two emotional breakdowns per day. Most of the time if she is redirected it gets better. Talking to dad usually helps.
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29862 N Tatum Blvd. #2038
Cave Creek, AZ 85331