To say that the Feeding team was not intimidating is an understatement! MAN I was grilled!
From why I do not try foods to how much of her bottle does she normally take and when do I usually feed her and what is my schedule.....
Schedule?? With a child who has had unpredictable seizures for one year do you think I have a schedule?? Seriously folks...I fed her when she was hungry...let her sleep when she would fall asleep...and if she was not fussing for food Id watch the clock and just go every 3-4 hours er so...(IF she was awake and not zonked out from a seizure....) AND if I did try the every 4 hours do you thibk she would even take her food each time??? uh....no. when she would wake Id get a bottle ready....pretty easy huh?? Well I guess I was supposed to have a precise amount in ounces that I feel she normally takes in a day...and how long it takes her to finish a bottle...Has anyone ever timed a feeding?? When I was trying to tell one woman something another would interrupt and say something like "sorry to interrupt but...." and there goes that train of thought...poof.
They had this huge cabinet of different bottle nipples in packaging and sippy cups and bibs and different contraptions that kids can sit in to eat..from boosters to this thing with tons of straps on it...cant even explain it!! We chose the traditional high chair...lol
Well I cannot say that my Madie was agreeable AT ALL!! ohhhhh the tears....oh the red cheeks.I wanted Madie to understand So badly that I needed her to just sit in the highchair and take ONE measly bite of food for us...as I was getting her in the chair....all eyes were on me....."hows my tecnique?" I wanted to ask sarcastically......
Well Madie began to cry and cry..I knew she was tired and I knew that maybe her meds were kicking in and she was ready to to to sleep...poor baby....
I showed them all the foods I had brought with me....Squash, Bananas, Chicken Noodle Dinner,Pear Pineapple..... Well as I showed them they all conversed with each other about how "oh..that's a little strong flavor" "no, not that one" "oh, I wouldn't try that one" then one looked up and asked if I had anything blander....
WELL if anyone called me and gave me some kind of instructions....of what I am SUPPOSED to bring.....I was getting huffy..but remaining composed as I asked: "Well, do you have cereal?"
We tried Squash..cause that seemed like the easiest flavor......gah.
ONE small spoonful set my tired little one into her hysterics....they all just watched me....then one said "Do you think maybe she wants her bottle?" I said as I wiped her face and took her out of the highchair I simply said she was tired that was all...I poured a shake into a bottle as they continued to observe me..madie refusing I just wrapped her blanket around her and snuggled with her..she was asleep in seconds...
We just sat around this table and they began to critique madie's bottle..."oh this nipple looks old" maybe its time to get new nipples....
GAH!! We are here not to critique my lack of shopping for nipples......
They suggested we change the type of nipple to a different flow instead of the cris cros hole get the ones that are just a little hole...to make her suck harder to build some muscles in her face that looks "low tone" HOW can a face look low tone?? Okay so maybe her muscles are weak that help her chew and suck and awallow..etc..dunno, ya think all that thunb sucking..lol I had a few of these one hole nipples and she is just fine on them..eh..dunno
We are also slowly getting there with GI appointments and Barium swallow study etc...Ill keep ya posted when we are going to do those,,
We head back in 2 weeks...(think i already said that) :P
Soooooo any feedback?
I just wish a doctor would give me some kind of hunch to what is Madie's prognosis...the fear of the unknown scares me daily...We are going back to Genetics in March for hopefully a less frustrating apointment...maybe the guy can tell us something instead of talking about how I carry Fragile X Syndrome and Madie doesnt....."next test please"
ON THAT NOTE...Im thru typing today and Madie is having seizures as I type in her sleep...juuust increased her Depakote yesterday to 3ml 2x daily... ALSO got the OK to lower her Zonegran...am i CRAZY FOR WANTING THAT?
HUGGGGGS MAMAS :)
4 comments:
Well I think it is going to be frusterating because you want her to show them how she does eat at home but with all eyes on you and her its tough! Kids are so unpredictable you never know what you are going to get. These appts will be much like the seizure appts they try to get lots of answers out of you. You try to sit there and explain things best to your ability and at the end they look at you crazy. My suggestion is to write it all down have the notebook with you at all times write in it the time she was fed what it was and how long it took and how willing she was. Then take it with you to the next appt, it will make things go much smoother. Dont let these appts overwhelm you, it will only make things worse. Just try the things out they suggested and maybe it will work. I see where you are coming from though, they are being to judgemental making it look like you arent trying. But just keep in mind they dont live with her they dont know her. These guys are very stubborn. Getting a smaller nipple does make sense to work those facial muscles better. Also does she recieve Speech Therapy? Well during Camerans speech classes and feeding classes they would get a nuk brush and have a cup or cold water and warm water and they would rub the inside of her cheeks with it trying to wake her mouth up and it worked. Maybe trying that would help just giving her mouth some stimulation. Also another idea is getting her what you call P's and Q's they are these actual letters that are chewy. Cami loved chewing on them it really helped her alot. We kept it on one of those stretchy curly key chain holders and clipped it to her clothes so she had it with her all the time. I actually found it the other day. You can buy them from your therapist for a few dollars. If they dont know what it is or have access to them I can go get you one at Cami's old school and send it to you. Its worth a try! Now another idea and this is all coming from what we tried with Cameran she went through a very similar case as Madies. They told us to let her play in the food. Put some mashed potatoes on her tray and let her play in them and maybe she will give it a taste. You can try yougurts, puddings try mushy things. Get some of those baby cookie sticks and show her how to dip it in the food and lick it. It will help in her hand cordination as well and self feeding. But also those foods well wake up her taste buds. For breakfast try real oatmeal and instead of water mix her shake in it, a taste she knows. Just let her play in it, let her explore her food and some better tasting food. It may make a mess but you will be surprised. And this has to be done everyday whether she likes it or not she will get use to it. Try to keep an open mind. Yes she is going to hate it but it is helping her! Hang in there!
Thinking of you ((((hugs))))
Man, I hate that feeling of judgement...I'm in constant fear that I'm quietly being blamed for everything...from his tummy problems, to feeding problems, you name it. I always hope I'm just being paranoid! I guess it's normal...to feel responsible for every little issue your kid encounters. And, I know that's not always the case. These people only see you and Madie for a short period of time and even though they're considered the experts...you're the only real expert on Madie's behaviors and moods. I certainly know what it feels like to have people act like you aren't trying when you really are. I might would try all the suggestions and go from there. If that doesn't work, go to Plan B. If the experts' advice fails, maybe they'll take her decreased appetite a little more seriously. Instead of assuming you're not trying enough or that you're doing something wrong, maybe they'll try to find out if there's a medical reason (i.e. the Zonegran -which I've read does decrease the appetite significantly) why she's not hungry. I would just keep trying the feeding every few hours..that's what our OT suggested for Austin and it seemed to really turn him around.
Mainly, just hang in there....I know from your frustration how hard you are really trying. You wouldn't be so upset if you weren't trying. You're doing the best you know to do. Now, just take their suggestions and see if it helps. Then go back if it doesn't. Just be strong and know that you WILL get her there.
Trouble is every expert is only an expert in what they deal with.
Its a bit like a jigsaw. If you concentrate on just one piece you won't get anywhere. You have to put them all together to see the whole picture.
Boy I certainly know how you feel! Everyone harassing you with questions. We have no schedule whatsoever either and it's hard to explain to people how difficult it is to get Reagan to eat. She just never seems to get hungry. EVER. We're working now with a new feeding therapist that seems to think a lot of Reagan's eating problems are due to respiratory problems. She breathes in quick rapid breaths and she thinks this is because she has weak (tight) abdominal muscles. She's coming at it from a completely different angle, so who knows maybe we'll see improvement this time!?!?! She did mention today that she thinks Reagan has great potential. So that's good right? (But compared to what?) Anyway, hang in there. I know it's tough but it sounds like you've got a big group that is going to get on top of this and really give you some good suggestions. And hopefully the changes in the medications will work in your favor as well. Take care,
Tera
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