Banana love affair

Yes my child is in love with bananas she will eat them for breakfast, lunch and dinner. She will even take her medicine with no complaints when its mixed with .. yes you guessed it.....bananas. This morning it was like she was in heaven eating her banana. Rolling it around her mouth even getting good lip closure (for those of you who don't know the world of special needs terminology - kiddo's with oral motor issues usually have trouble closing their lips hence a lot of kiddo's drool a lot.) Because Annabelle has oral motor issues and swallowing issues she battles with movement of her tongue and movement of her lips and coordinating it all so that she can eat - But it seems not when it comes to bananas.
So bananas will be on the menu for the foreseeable future.

Well you are probably thinking, if you have been following our blog, what happened to the swallow study that we were supposed to do? If you want to catch up here and here .
We were due to do a repeat swallow study to see if there was any regression after having stopped doing the Vitalstim therapy for 3 months.  To see if she has started to aspirate again. Well it has been 5 months since we stopped Vitalstim she has not had a chest infection, bronchitis, pneumonia in this time ( this would definitely indicate that food/liquids when swallowed was going into the lungs, meaning she was still aspirating) and she hasn't so that's good news. Also since we left our previous house the vomiting has been minimal and she is still eating and drinking well.

So I emailed the therapist that used to see Annabelle for Vital Stim and we have decided to put the swallow study on hold for now because Annabelle is going through this detoxing of the mold toxins and to subject her body to unnecessary test which includes X-rays (radiation) would be silly, when we can see clinically that she is doing a lot better. Just in time to eat all that turkey next week for Thanksgiving.

"Get me out of these pumpkins and give me a BANANA!"Said Miss Lip

Vitalstim update and a Great recipe

It has been 2 months since we stopped Vitalstim therapy, to catch up with the story check out my previous 2 posts here and here.
Annabelle is still eating well and has put on a pound in the last 2 months which is really good seeing that she pretty much stayed the same weight from Feb- June
If you are stuck for ideas for something to cook tonight, here is a great recipe for Turkey meat loaf! Because Annabelle has allergies to the following foods gluten(wheat, rye and barley) corn, dairy( milk and cheese) soy, tomatoes and eggs it is always a challenge to find recipes that taste good and accomadate all her allergies. This particular recipe was given to us by one of the vital stim therapists at CHOC, and has become one of our families favourites, try it! It might surprise you how good it is! We usually double up the recipe and freeze one to use later.

Turkey Meat Loaf

1 medium onion, quartered
2 carrots, each cut in 2 or 3 pieces
1 handful spinach, washed
1 1/2 pounds ground turkey ( if you are English that's minced turkey)
1 cup cooked quinoa ( pronounced keen-wah)
2 tablespoons dried thyme
2 tablespoons chopped fresh parsley
1/2 teaspoon ground sage
1/2 teaspoon sea salt
4 tablespoons organic ketchup (we leave this out but you can leave it in if you want)

1. Preheat oven to 375 degrees combine onion, carrots and celery in a food processor and pulse until roughly chopped (do not purée) transfer to a large bowl.
2. Place spinach in food processor and pulse until finely chopped. Add to onion mixture. Add remaining ingredients to bowl and mixed with fingers (here's where you can get your child/ren to help with the squishy part combining all the ingredients with their hands). Form into a large loaf and transfer to a 9x5-inch loaf pan. Brush with additional ketchup. Bake for about 1 hour, cool 5 minute before slicing. Serve with roasted sweet potato batons.

VitalStim - the importance of being able to swallow!

Ever since Annabelle was about 2 weeks old I had trouble feeding her. Because I think breast milk is the best thing for a baby I persevered even though she arched back, lost her latch on, coughed choked, burped, cried, refused to feed, bit me, had to give up loads of foods because of all her allergies I never gave up! I eventually figured out that she was a child that needed little and often feeds and that lying on the bed and I would cradle her she wouldn't arch so much and I could keep her latched on long enough to get enough and she wouldn't cough and choke as much either.
When she turned 6 months I started trying her on solids it was a bit of a disaster to say the least her tongue thrust was so strong it just pushed any puree out as soon as I got it in, the food that did go in she coughed and choked on, we weren't getting any therapies yet and I didn't know what to do but thought maybe she wasn't ready for solids so put it on hold.
We started a group program when she was 7 months old and only received OT when she was 12 months old, I got a few tips on feeding from the OT's at the group program and heard about something called a swallow study, I asked our pediatrician about this and he said that the OT needs to do an evaluation, eventually got the OT at CCS to do an evaluation. They weren't sure if Annabelle was aspirating but I convinced them to recommend we do a swallow study ( this is where they x-Ray the child while feeding and they can see how and where is goes down). Annabelle was 15 months when we did the first swallow study it was found she was aspirating ( when she swallowed the airway would not close properly and liquid/food would go into her lungs) and she wouldn't always cough when this happened this is called silent aspirating, and aspirating on thin, thick liquids and purees.When this happens you are at high risk of getting chest infections, pneumonia because there are objects in the lungs that shouldn't be there. Luckily Annabelle never had chest infections because she was mostly breast fed. But she did alway have a runny nose this was because when she swallowed she would also reflux up into her nose.
Well the recommendations from the swallow study was that we see a GI, we had already taken Annabelle to see a GI when Annabelle was 6 months old, she had said that all of Annabelle's problems were neurological and that she couldn't help us (but proceeded to charge us for
the appointment anyway) Well we thought we would get a second opinion this time this GI suggested that Annabelle should get a g-tube ( this is a surgery where the a tube is fitted directly to the stomach and a button is placed on the belly and food can be syringed directly into the stomach) Well I am not big on any kind of surgery especially not on my 15 month old child.

I had heard about this therapy called E stim / VitalStim and I asked the GI if would could try this out before we went ahead with anything as invasive as surgery, we got referred over to CHOC Rehab for an evaluation. They said Annabelle would be a good candidate for trying VitalStim, we started VitalStim a year ago.
What is VitalStim? Electrical stimulation therapy is a specialized form of neuro-muscular electrical stimulation designed to treat dysphagia (difficulty swallowing). It is a non-invasive therapy that uses a small electrical current delivered by specially designed electrodes, which are placed on the face and or neck. The current stimulates the motor nerves and the muscles responsible for swallowing. This stimulation facilitates strength, coordination, endurance and increases sensory feedback and timing in the muscles involved in feeding and swallowing. While the electrical stimulation is being administered, a certified therapist helps patients train their muscles with special exercises. With repeated therapy, muscles are trained the movements required for swallow. The main goal of electrical stimulation therapy is to strengthen weak muscles and to help in the recovery of motor control.

We went twice a week for a year we had two great therapists, after 6 months we did another swallow study and Annabelle wasn't aspirating on anything during the study.
We continued with therapy for 6 more months and the therapist and I decided that we should take a break for three months and then do another swallow study to see if there is carry over of the therapy or if Annabelle regresses. There is always a chance that the muscles will atrophy if they are not used. So the best way to prevent this is keep Annabelle eating. I will keep you posted.