A little fun

Being here at Lorioux's practice most of the day, we have meet many wonderful people as they come through with their children for different therapies. There are some act like we don't exist and just sit in the living room with their nose in a magazine, but most strike up friendly conversation with us. The other day a sweet women was corraling her three sons through the door when I called to Mic. Out of the corner of my eye I caught her swing her head up. "So your Mic's family?" she asked, introducing herself. "We've been praying for you" she continued. What a sweet comfort and blessing--she had never even met us, but has been lifting Mic up in prayer. We chatted a little while her son was in therapy and then as they were leaving she invited us to visit the children's museum with them sometime before we leave. SOOOO, that is what we did today! We hurried in the morning to have an earlier lunch and to leave supper already prepared and waiting and off we went to have some fun! (click here http://www.imaginecm.org/ to see where we went)
Mic was a little overwhelmed when we first got there, but warmed up very quickly, and she had so much fun playing! Baby D even had a good time as there was a good mixture of age appropriate activities for the very young and for the "older" young. ...in fact, even the down right "old" like me had a good time! : P
We are so greatful to Leigh for being so kind to us--thank you again!

As for feeding, we continue to have some highs and lows as we go, but the averages really aren't so bad. Tomorrow I believe we will have some concrete averages to look at so I will try to share those with you here and give you a better idea of where we are at later.

In the meantime...my brain has shut off, so I think I'll be going to bed now. ...more to come...

Pondering the Palate

We (well, mostly Lorioux) have been anylizing progress thus far, behaviours, data and the like. And today she was talking about a probable explanation for some parts of Mic's feeding stuggles. She thinks that Mic may have a problem with her soft palate formation (or lack thereof). This would make it easy for food being savored (especially purees) to go up instead of down--Mic refuses purees and sometimes has food come out of her nose. Food going up instead of down is painful which would promote chewing in front of the mouth instead of the back--Mic does that, always. And a ball of chewed food collected in the front of the mouth does not promote swallowing (she has a delayed, reluctant swallow) and is very easy to spit out (this happens often). I think she has described Mic to a "t". I think her almost exact words were something like, "Mic is cooperating and eager to please. She is trying. But there seems to be something else" [making this difficult and causing these actions]
...now to find a realistic solution...
...I hope its not surgery...

My Pumpkins

Tonight I thought I would rather just paste some more of my favorite pictures from the trip rather than become redundant with today's feeding pleasures and woes!

Ready to swim and loving cousin N's hand-me-down trunks!

Mic says, "I'm ready too! Lets dive in!"
Photo Gallery:
"OUR PUMPKIN WITH HIS PUMPKIN"

Some sibiling moments...

Enjoying the View

Since she was a tiny infant Mic has had sensory issues and traumas surrounding sensitivity in her face. She couldn't handle a kiss on the cheek and a whisp of hair in her face could make her gag and vomit. I suppose I am too close to her life and situation sometimes to percieve the changes in her. Just like how we know our children grow in height even though we can't actually see them growing, but then time passes and we measure them again and are blown away by how tall they are.
The other day, between therapy meals L. and Mic were playing with bubbles. L. blew the bubbles and Mic lifted her face to recieve them full on, her eyes aglow with excitment and shouting, "pop, pop, pop". No flinching, no gag and vomit, no running away or crying. Just the great joy that every child should be able to have at the light sensation of bubbles on her cheeks.
And I just sat there, profoundly moved, "enjoying the view" and realizing that I am not sure when or how it happened, but she has been restored, quietly, little by little, and I don't have to think twice anymore when I kiss her cheek to tuck her in bed for the night.

Every meal we keep data in a notebook of the foods offered, ammounts eaten, oral and tube calorie tallies, ect. And now having 9 days of data to go back over some trends are begining to emerge. One seems to be two or three days of steady climb, then a day or two of a "dip", then another climb. but each "dip" is at a higher number than the previous one showing that over all we are making two steps forward, one backward type progress. That means that today her oral calorie intake was back down to less than 50% of her total calorie intake, but it also means that based on past patterns in the next day or two we can expect, Lord wiling, another increase in oral intake!

This afternoon we went to Value Village just for fun. We made several great finds, but I think the one that topped them all was a big hard back book with seven different Dora stories in it--for 69 cents! It looks brand new and Mic has been pouring over it all evening.

Just call this Titleless Monday! My brain is to tired to come up with much of anything right now. However, all in all, today was a better day-PTL. Breakfast has generally been the toughest meal & today was no exception. But we got past it and moved on and actually by the end of today her toal calorie intake was a little over 50% oral!!! This really is a cause to celebrate! ...especially if she can manage to maintain or improve on this trend for several days. --I mean REALLY, I have to remember that only eight short days ago she was 0% oral!
I am very happy with how this is going. It does feel painfully slow, and yet I know that its actually amazing progress for such a short time. And while I Know that worry is just a joy robber, I can't help but feel a little concern on the nutritian piece. All this is SO focused on calorie counting...because it has to be. Bottom line is weight gain & brain protection. But I still know that until the proper nutritian is in place to complement those calories we can't look at a realistic G-tube removal scenario. This frusterates me. And I know I am getting way ahead of myself. And that frusterates me too!!! : P
OK, enough on that!
Bottom line..."Thank you, Lord, for this amazing gift. ...amen"

A few pictures from the journey

...This journey, as you know, is all about oral feeding. Isn't this pic appropriate?! DH took it, and I like it. It depicts what we have been working on perfectly...unfortunatly, it was taken at the end of the meal. But our faith is high and strong and we know that in time this will change drastically. ...Thank you, Lord, for all that you have done and are going to do!

Trees have a way of anchoring memories and linking generations...I played among these branches as a youngster...

There is just nothing like reunions after long absences...and of course, good food is also always a vital element! This was taken a couple days after we flew in.

"Hey Mom, I found my belly button!!!" (and he sat there poking it for a good five minutes!)

So, back to where we are right now, this is Mic and Lorioux, and our new favorite book, "A squirrel's tale". Yeah for great motivators!

Today, all in all, things went pretty good considering we didn't have Lorioux there to help us. Lunch was a little tense, but after washing hands at the "end" she came back and tacked on a good part of an enlish muffin. That pulled us out of the red in the calorie count for that meal. At supper I was afraid to even tally calories and got a good shock, three tortilla chips ring in at a whopping 35 calories! Can you believe it!?! So, I was just glad that Lorioux's absence didn't send us into a terrible downward spiral. That was reassuring.

It was an exhausting day. Baby D. hasn't had a decent nap since we got here on monday, so that is also really starting to make things difficult. Don't forget to include him in your prayers as well for some teething relief and rest. I am not sure if I will be able to make time to post tomorrow or not. Either way,...have a blessed sabbath!

You might be an oregonian if...

...you sit at the gas pump in the car for over 10 minutes waiting for someone to come "fill it up" for you, before it sinks in that no one will come no matter how long you wait!!! (... giggle. we did that today!)
Feeding Therapy:Day 5
Today Mic had a better attitude and outlook than yesterday. Thank you for the prayers. However calorie and volume intake was still rather low, and especially breakfast and lunch were a bit difficult. Just to give you an idea, at breakfast she had a whopping 10 calorie total oral intake. Supper, the over all best meal of the day, rang in at only 54 calories, but the volume was really good --almost a whole ounce of chicken, plus a few dabbles of a couple other things. We are still resolving some issues. One that we dealt with today was staying one step ahead on her avoidance tactics (i.e. I feel challenged at mealtime, oh, wait, I need to go potty) ...and there were more...
I guess I havn't done a very good job of explaining the actual therapy, but that is partly because its really hard to explain in words. Anyway, up till now Lorioux has been Mic's feeder and therapist, and at the same time, our teacher. Tomorrow, the real fun starts. Over the weekend L. will leave us on our own during the meal times so that we start to practice with Mic. This will give us a chance to meet our first challanges and define our biggest questions with a whole week of therapy left afterwards to deal with/work them out. (Thank you for your continued prayers!) It shall be intresting. ...but that really is the beauty of this therapy, it doesn't end in two weeks. In the words of Lorioux, "it goes home with you". And that is really good, because while we are making amazing and wonderful progress, we also have a long, long, long ways to go!
OK, I am, once again, very sleepy, so the rest will have to wait!
LOL, goodnight!

Harder

Today...was a little rougher. Mic had a meltdown at breakfast and from morning till late afternoon she just seemed generally tired and a bit out of sorts. She was also less cooperative on all fronts--eating was not an exception. A partial explanation would be that "reality" might be sinking in for her. Anyway I was feeling a little bit discouraged in the morning too.
In the afternoon we took a walk around the block as a family. Its amazing what a little bit of sun and fresh, crisp air can do for the mind and soul. ...Thank you, Lord, for your beautiful creation and the refreshment it brings! We saw flowers, beautiful fall leaves, perfect spiderwebs, some fat litte weiner dogs, and a queenly cat, and got back to the house with red noses and cold cheeks, but lifted spirits.
Retrieving the positive from the final oral calorie count of the day, in at barely 200 calories of oral intake for the entire day, she has been struggling to be receptive of more than one texture or flavor at the same meal, its a change that is difficult for her, however, at supper she managed very small amounts of three different things--carrot, chicken and ceasar dressing.
We are trusting the Lord for a better tomorrow.

...about 75% ketchup...

Day three. Come and gone.
So, it is amazing how tiring cooking, eating and cleaning up can be! I mean really, that is about all we do all day! The Toft house, where the therapy is located is rightly named. Although it IS an office, it looks just like a house. We arrive, prepare breakfast and sit down with Lorioux to eat. Then we clean it all up while we bolus the rest of Mic's breakfast. By the time that is done its snack time, so we do that and play with the children. Then its time to get lunch going. We eat that, clean up and do another bolus. By the time that is done, its snack time again...another game and perhaps a quick extra activity (grocery shopping, or a dip in the pool) ...and, yup! you guessed it, hurry up becacause we are going to be late with supper! And whew, by the time supper is all done and cleaned up we are exhausted and it time to get that last water bolus in and get the kids changed and to bed. And believe it or not, that is basically our day.
At the toft house there is a kitchen, living room and dining room area and plenty of toys and books to keep the children occupied. And plenty of space for us to be compfortable, so we really are just there most of the day.
Mic is doing really well. She struggles most with swallowing. We are learning that keeping her talking during the meal, ironically, is what helps her most to keep eating, that and also giving the next bite even though part of the last one is still there in her mouth also kind of helps her keep things moving. That is exactly oposite of what I would have thought, and is unique to her and her needs.
Today she took over 300 oral calories again. I think it was about 340, if I remember right. A very high percentage of that was ketchup. At one point she was eating just a spoonful of plain kethcup, nothing else to go with it. All the good things on her plate and that is the only thing she wanted in her mouth. I think we are going to play around tomorrow with some ketchup-like foods that have other ingrediants blended in to see if we can help the nutritian intake at all.
Right now, calories and nutritian feel like a tug of war game to me. It feels like an either/or situation instead them going hand and hand. That is frusterating to me. I hope it is just temporary,...we are still just on day 3, right!?!

God bless the makers of salad dressing!

Well, "Day 2" of feeding therapy has come and gone. She had some oral intake at all three table meals and one of her snacks. Volume is still quite low...1/8th of an ounce of this, 1/2 of an ounce of that...HOWEVER our total oral calorie tally of the day was not shabby at all! Thanks to cookies and salad dressing we slid in at just above 300 oral calories! She had healthier things to eat too, but those things just don't get us where we need to go by themselves! Mic is working so very hard and doing such a good job, and really, Lorioux is amazing with her. We havn't dealt with a single gag yet. That has me absolutly floored.
We are so thankful to the Lord. He is flooding our lives with so many good things and such amazing blessings.
Tonight I think the calorie cut is starting to catch up with her. She is tired and hungry. Please help us pray for wisdom to know how to balance this and for continue health and strong immune system for Mic despite the "hit" it is taking. And PTL for healing me of a bad sore throat yesterday!

Day One (112 calories!)

I could write a book on just the events of today alone. ...but I won't. In fact I will do my best to keep my comments to a bare minimum...sleep is of the essense here!
In a nut shell, feeding therapy started today. Breakfast was aweful, but Mic caught on quick to the jist of the structure. That, so far, being motivation driven oral feeding and basically no bargaining.
Lorioux is SO positive and gentle.
By the end of the three meal and two snack day the tally was in. Despite there being one meal and one snack with a big fat zero on the oral calorie intake, the days total oral calorie intake tallied at 112.25 calories! With that, I am tickled pink!
By the time we got back to the hotel I was seriously exhausted. I really just wanted to dive directly into bed, but Carlos convinced me to sit in the hot tub a few minutes first, and I am glad he did. I feel a little bit better--renewed. And I know that I will sleep better.
Nighty-night

Road Trip

We made it!!!
The roughly 4 1/2 hour drive to our therapy site, and sharing the back seat with two bulky car seats was not something I was overly excited about, but it went OK. Of course it took us longer due to a couple stops, but we did finally get here and get settled in.
The hotel room isn't real big, but it is nice and will work. ...the pack n'play even fits in its own little nook by the closet which will give baby D his own space for sleeping--I was pretty happy about that!
We got to meet Lorioux, the therapist, and she showed us around the house where all the therapy will take place. It is nice and homey, friendly and comfortable. Mic was a bit withdrawn, defensive and timid, but L knew how to give her her time and space. I was pleased with that, I think tomorrow Mic will be ready to come out of her shell and interact much easier for having been there today even if it was brief.
Oh, and we weighed her. She weighed 28lb (12.7 kg) according to L's scales!!! I am so pleased! This is a great place to start from, as opposed to the supposed 10kg our scales at home tried to register...I just knew that couldn't be right!
We are feeling the prayers (thank you!) and God's presence at work. I do feel a bit overwhelmed about tomorrow, the unknown, shopping/cooking in a strange place, plus I need to make BD too...but I know that it will be OK.
...more to come later,
Goodnight!

Almost There...

It won't be long now until feeding therapy starts. In the last several days Mic has been quite open to oral tastes and even asking to taste things sometimes. That is SO encouraging. Of course the over all volume of her oral intake is almost zilch, but this is a great starting place and there is no doubt in my mind that this is a direct answer from God to the prayers of so many on her behalf! If you are helping us prayer warrior this, please continue for pray for her to be able to overcome her fears. These tastes, while they are ground breaking still often get spit out instead of swallowed.
Travel was not without its last minutes excitement. I won't bore you with to many details, but at less than 24 hrs. from flight time we called to reconfirm our flight and suddenly our tickets didn't exist. That was more than a little stressful, but thankfully we were able to get everything resolved in about three or four hours.
Then the night before we flew I got sick to my stomach. And spent much of that night up being sick instead of getting well rested for the big journey with two small children in tow. But, be that as it may, we made it, and that is the important part! PTL.
Its late, and I am still a little queasy. I'm off to rest. Stay tuned for more on oral feeding very soon!

Bet you didn't know...

I share below some little known truths about oral feeding as it applies to the medically fragile pediatric community:

• Contrary to popular belief, Breathing, not eating, is the body's number one priority. Postural stability is the second priority, making eating only prority number three.
• Our instinct only keeps us eating for the first month of life. By 5 or 6 months of age eating is solely a learned motor behavior.
• Eating is complex! It requires cooperation from every single organ system in the body, coordination of all eight sensory systems, six cranial nerves and 26 muscles.
• The process of learning to eat includes 30 or more individual steps.
• For those in the pediatric population with feeding problems the belief that if they are hungry enough they will eventually eat is actually false. Pain, fear and frusteration can all trump hunger and suppress appetite.
• Most children need to eat 5-6 small meals a day in order to take in enough nutritian to sustain correct growth and development.
• Behavioural and physical problems go hand in hand. Children with eating disorders cannot be generally divided into an either/or catagory.
• Feeding is supposed to be fun! Make it a spontaious, noisy and playful experience!

This is just a small sampling of the kinds of things I have been trying to store away in my little brain as we get physically and emotionally ready for my daughters feeding therapy.

Resourse: TOOMEY & ASSOCIATES, INC. 1780 South Bellaire St. Suite #515, Denver, CO 80222, Kay A. Tomey, Ph.D. (303)759-5316

MIC'S STORY (The Picture Journal)

Have you ever tried to par down literally hundreds and hundreds of pictures into a blog-sized journal entry? Well its not easy! And this is still going to be a pretty long entry. So with no further ado, here's the story, as told by Mic herself...

The drama surrounding my life really began and lived some of its most intense moments before I was born. In the last month and a half before I came into this world worrisome findings began to crop up. For starters I was just way to small for a third trimester baby and even worse my head was even smaller, out of proportion with my body. This lead to twice weekly heart rate monitering and lengthy ultrsound tests. In one of these tests my very severe bilateral cleft lip showed up. This meant there were two large openings in my upper lip where it did not join together and form properly. By then our doctor was nervous. He had a very serious talk with mommy and papi. He told them that these symptoms most probably pointed to some much more severe underlying problem in my cromosomes and that I might not survive birth, or I may just live a few hours or days. There was just no way to know, but in the meantime he wanted us to all go to a bigger hospital that had more experience with these kinds of problems.

That day Mommy and Papi gave me my name with all the weight of its meaning in their hearts. "The Lord's" And with that they cried and prayed over me and put me in God's hands, come what may.

Wednesday morning they took the trip up to Legacy Emanuel and had another series of serious talks with more new doctors. It was decided that I needed to be born as soon as possible and they scheduled to induce labor on Thursday at 11am. But I though it would be more fun to keep everyone up! Wed. night Mommy's labor pains started and they got to drive all the way to the new hospital again--in the middle of the night! We all got lost on the way, but finally found a policeman who helped us find the hospital. Every time a pain came, my little heart stopped almost completly. Mommy got the first emergency ceserian of the morning and by 9am I was born at 38.5 weeks gestation. I weighed 1.9kg (4lb 6oz) and measured 45cm (17 1/4 inches) long. I indeed not only had the bilateral cleft lip, but my palate was wide open as well.

Over the next 22 days in NICU the findings apart from my cleft lip and palate included microcephaly (small head), a VSD (two small holes in my heart) and two small areas of infart in my brain. At 14 days my G-tube was placed as I was not managing to eat much and complete nutritian was urgent for my developing brain. ...and midst all this my cromosome count came back 100% clean!!! Jesus healed me.

Mommy and Papi learned to use a special bottle to try and help me eat by mouth as much as possible.

22 days old and all dressed up, ready to come home.
In the first several months my muscles were a little to tight, I had a hard time relaxing my hands.
Five months old and sporting my "new" lip

At eleven months old I got my palate fixed and ear tubes popped in. Because of my continued developmental delays they did some more gene studies too, but found nothing! I was feeling pretty miserable, but wagon rides definatly helped--another reason we love Legacy Emanuel!
By the time I was a year old, I'd had three surgeries in my mouth and was 100% G-tube dependant. Cheese puffs were some of my first successful feeding therapy tools.

OK, tell me again how cute I am!
One year, five months old, a long ways from walking alone but starting to learn to use my "walker"--a GREAT start!
But I am still a peanut and weight gain doesn't come easily for me, just look at how I compare to daddy's shoe at one year, seven months.
Monkey see, monkey do...I liked to tube feed my babies too!
On my second birthday I started taking my first shaky independant steps! This was about six months later, by then I was a pro--Hooray!!!

Concentrating hard and trying not to lose my balance...
A new favorite game, "reading" books to my teddy bear.
I had some horseback therapy to help me gain trunk control and confidence, I loved the horse, but was really nervous up so high. However, I was a brave girl, never once did I cry.
More great changes in my life...a new brother!

I am getting bigger and braver
Mommy and Daddy love me SOOO much
And they tell me that soon I won't be eating like this any more.
I think that sounds intresting. I'll be meeting my therapist Lorioux soon. Between her, Mommy, Papi, Grandma and God, I think they are right, mouth food is definatly on the horizon for me, and some day, tubey food will be but a memory!

PASSPORTS!!!

"Praise the Lord, O my soul; and forget not all His benefits..." Psalms 103:2
My soul is most definatly praising the Lord in a special way today!!! This morning DH went in and recieved the children's passports. It generally should take no more than a week to get a passport here. It took us approx. four months to get these. But the important part is that we now have the documents in hand that we need and no changes to our travel plans will be necessary. TO GOD BE ALL THE GLORY. I am sooooo happy!

Today's Adventure

A first peek at our fun day. Blogger is the most frusterating thing in the world to me

when it comes to spacing and pasting pitures where I want them, which is why this

picture is here instead of where it goes! : )

Today some dear friends invited us to go village hopping with them, then we had a bbq out in the country at a place that belongs to their family. I paste below a little collection of a few of my favorite pictures from the day:

We saw lots of neat buildings,

and strolled down a picturesque pebble lane.
We saw lots of fun (especially for Mic) animals that I didn't get pictures of

like horses, sheep, dogs, a goat and a parrot,

and lots of beautiful butterflies that I did get one picture of.

A maguey plant: used by locals to make an alcoholic beverage called pulke

and to flavor some of the best mutton I have ever eaten!

Mic was scared of the puppy but her brother wasn't!

The food was great, and even better, the guys cooked!

Our dear friends

The amazing view from where I sat eating my tacos.

Now we are home, sweet, home again, relaxed, and little sun toasted and the good kind of tired from a good kind of day!

On other news, on Thursday they finally accepted our documents and Lord willing we will have the passports in our hands Monday morning...can't wait!

Mic didn't throw up today, PTL! But she is still only tolerating about 1/2 her normal daily intake, yesterday we finally broke down and started her on pedialyte to keep her from getting dehydrated to top things off. Please help us pray for her GI track, we really need her to be tolerating full feeds and NOT losing anymore weight right now. I went back in my records to see if I was exagerating or not about her being at 12kg for forever, and I wasn't, her first weigh in at 12kg was six months ago.

BLEEEEEH

Well.....so much for desperate measures! Little good all my well thought out, oh so carefully placed, extra calories did. Today most of them came right back up. Sigh. We hadn't had more than one vomit in a day in a very long time. But today we did. All said and done I'd say that maybe she kept down about a fourth of her entire daily intake today. I am feeling pretty deflated.

Tomorrow we are finally going to be able to apply for the passports. We believe that we now have every last document they could possibly ask for. Dear Lord, please grant us, once again, an extra measure of grace and favor in this process. Amen.