First off, let me thank everyone for their well wishes and prayers today as Elizabeth and I began this new "adventure". Next, let me say that in the last almost 5 years, all surgeries included, I can't remember ever feeling quite this emotionally, mentally, and physically drained before. Of course now it's a toddler I am dealing with and not an infant,but man, I never thought this would be so draining and it's only the first day and a half day at that.............
Anyways, we met with the whole multi-disciplinary team today. Which includes a medical social worker, psychologist, nurse practitioner, speech/ot/feeding therapists, dietitian, child life specialist, and doctor....now that is a team of people!!! They basically went over Elizabeth's entire medical, social, and psychological background from birth til now. The nurse practitioner did a physical on here, the dietitian got her height and weight. The therapists did a few tests on her mouth and tongue. The psychologist asked a lot of questions about Elizabeth's personality and temperament both relating to eating and in general. And the whole time I am being asked these questions I have a nearly 5 year old to try to entertain and keep busy the best I can and try to make listen to me....HAHAHA!!!
Then it's on to the first feeding session, which I did and the therapists watched. Also, every feeding session is taped. For the first one the gave me stage 3 baby food, spongebob go gurt and a 4 oz glass of whole milk. All in all the first session went rather well. E and I took turns feeding her. She was of course distracted by the video camera in front of her as well as everything else in the room she could see. The therapist were behind a 2 way mirror watching the whole session. And of course they said "do what ever you would normally do at home. We are watching Elizabeth's behavior and how she interacts with you and the food. We aren't here to judge you or find fault with anything you are doing." But seriously how can you not be guarded and not feel like they aren't judging you and thinking...."what a horrible mother, she can't even get her own child to eat properly!!"
After that session, which I might add that she ate the whole 7 oz jar of baby food and drank the whole 4 oz of milk, however she wouldn't touch the gogurt and all in 25 minutes...that's a record for us folks....the social worker took us on a tour of the facilities.....basically, here is the cafeteria, the family room, napping room, play room, and courtyards to play in. There are 3 other families in the program right now as capacity is 4 patients and E made number 4 today. So the four families get to share all these areas.
After that it was on to feeding session number 2, which again I fed to her. This time it was some Captain Crunch and regular milk and strawberry milk. Again she was still distracted by the video camera and things in the room along with her booster seat she was sitting in...she wanted to keep buckling and unbuckling the seat belt on it...anything to not eat. And true to form she should some of her attitude by refusing to eat or just play with her food and finally laying her head on me and not wanting to pick it up. After 30 minutes and numerous attempts to get her to eat, I called the session done. She had eaten roughly 1/2 the cereal, which wasn't much to begin with and drank all the regular milk but didn't want any of the strawberry milk.
After that it was time to head home, thank God, as we were both tired. She got to take a nap on the way home....of course I wasn't so lucky as I had to drive.
I figured I would post here what our routine is from day to day to give everyone an idea of what this is really like.
Monday:
7:45 a.m. : Arrive for weight/measure
8:00 to 8 :45 a.m. : Meal #1
10:30 to 11:15 a.m. : Meal # 2
1:15 to 2:00 p.m. Meal # 3
2:00 to 2:30 p.m. parent meeting with psychologist
3:30 to 4:15 p.m. Meal # 4
Tuesday
8:00 to 8:45 a.m. : Meal # 1
9:30 to 10:00 a.m. : parent food works class with nutrition team
10:30 to 11:15 a.m. : Meal # 2
1:15 to 2:00 p.m. : Meal # 3
3:30 to 4:15 p.m. : Meal # 4
Wednesday
8:00 to 8:45 a.m. : Meal # 1
10:30 to 11:15 a.m. : Meal # 2
11:15 to 11:45 a.m. : Parent meeting with social worker
1:15 to 2:00 p.m. : Meal # 3
2:00 to 2:30 p.m. Family meeting with whole team (everyone involved in E's care)
3:30 to 4:15 p.m. : Meal # 4
Thursday
7:45 a.m. : Arrive for weight/measure
8:00 to 8:45 a.m. : Meal # 1
10:30 to 11:15 a.m. : Meal # 2
1:15 to 2:00 p.m. : Meal # 3
3:30 to 4:15 p.m. : Meal # 4
Friday
8:00 to 8:45 a.m. : Meal # 1
10:30 to 11:15 a.m. : Meal # 2
1:15 to 2:00 p.m. : Meal # 3
3:30 to 4:15 p.m. : Meal # 4
Oh and let's not forget the Elizabeth still takes and needs her naps, so I have decided that her nap time will now be between the times of 11:30 a.m. and 1:00 p.m. Also any other down time that is there I may have to meet with other people on the team if need be. It probably doesn't seem that bad to most people when you look at it, but doing it is a whole nother ball game.
Tomorrow I have to again feed her two more meals, which will be meal #1 and #2 and then after that the therapist will feed her 4 meals total. So 2 tomorrow and 2 Wednesday morning. From there they will figure out what her baseline amount of food to be eaten every feeding is and what they need to work on and also what I will be giving her through her feeding tube at night time.
I literally have to write down everything I offer her as far as food and drink at home, what she drinks and eats of it and all day long I have to write down when she urinates and has bowl movements so they can figure out what she needs as far as her intake of fluids and food. It is a very all consuming job and is definitely a lot mentally and emotionally, especially feeding her.
I plan to try to update this blog everyday, but for sure every couple days. We thank you for all your continued support, prayers, and encouragement, because without all of you I know I couldn't be doing this myself. There are a few of you, and you know who you are that I can't thank enough for the love, understanding, and support through all this. It means the world to me and really truly makes a difference.
Also, as you can tell form the schedule listed above, there are only certain times of the day that I will be able to answer my phone or make calls, so please don't feel I am ignoring you, but rather I am working with Elizabeth and that is what is the most important to me right now. We love you all!!
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