Tuesday, February 5, 2013

Round 2!

So yesterday was day 2 of Seattle appts for Taizi.   There wasn't as much excitement to be going back for Dean and I...so soon ;) We put some great music on and made ourselves have fun.  Seriously...it's a haul.

The kids were great. Izrael has never liked the car...since 24 hours old. Our only child who has freaked in the car. However she does really well and there wasn't a peep the whole way there! We didn't stop once. People ask all the time how many stops with 9 kids. ;) None ;)  We all do potty before we leave, whether you have to go or not...yah yah I know...but if not we stop every 20 minutes for a different child.  It was exactly 3 hours to the edge of Seattle yesterday...in other words great weather through the pass.

We got there right on time, Dean dropped Taizi and I off at noon. Our appt was at noon.  We walked in and instead of screaming bloody murder like last week, he did his other trauma-reaction: fits of giggles. It's not a laugh...it's a hysterical (literally...in hysteria) giggle.  There were definitely just as many looks as the giggle is very checked out.  He tried this for over an hour. It was almost turning into tears then he'd go back to giggles.

First we saw cranio facial. A different doctor than Azlan had as a baby (thankfully).  She was wonderful. She right away knew his laugh was not right and said "it must be so hard b/c people probably hear him laughing and think 'oh how cute!' meanwhile it's kind of out there isn't it?"  Exactly. It's not a sweet laugh it's totally checked out.  We talked about a number of things and she gave a few suggestions but said she doesn't know his syndrome they are just trying to weave it together.  She mentioned CHARGE syndrome which honestly is like you have eye issues, face issues, heart issues, clefting etc they they put it all under one category.  A lot of concern was regarding his weight. We got a lot of kudos for taking the intiative and pushing him out of his comfort big time but getting a lot of nutrition into him.  The shock is the lack of weight.  She said we were going to meet the nutritionist as well but her concern was it may just be HIM.  That his body is just done growing. We have to check off one thing at a time.

The social worker was amazing. Letting us know a lot of things that were available to help us etc. with so many trips to Seattle.

Nutrition was interesting.  She was completely, whole heartedly BAFFLED at his lack of weight gain.  We went through what he eats and how often and she doesn't get it.
When we talked about the hair growth she said that's the first thing TO grow as it only takes the micronutrients.  She said it shows how very poorly nourished he was in the orphanage to NOT have hair.  We had drawn that same conclusion.
Taizi's history is this: he was found at 3kg.  At 11 months old he was 7kg.  At 2 years old he was 7.5 kg. And at 3.5 years he's 9.5 kg.  So you can see where something went terribly wrong. To gain only .5 kg in 1 year is a problem.  And the growth has been a problem since that point.

1. We are to eliminate formula completely.
2. He is to eat 100% Pediasure through a bottle.  Now before you write me and tell me how awful it is...I know :(.  I know the ingredients. I know the horror of it. I spoke of it very strongly and she said "I agree but you can't fight that battle right now. There is nothing else that gives the FAT, CALORIES and PROTEIN that that does per ounce".  Yes I have amazing protein powder but it doesn't have the fat.  He needs all of it.  It's filled with garbage quite honestly..the 2nd ingredient being high fructose corn syrup but I have no other option right now.  She also said it will be delivered to my door through insurance which is a huge help as his food is costing us $4 a day JUST in pediasure...not counting his other food.  So I'll swallow that one for now b/c in the end we want the same thing: a child that has weight gain.
3. We have to fortify every other food that goes in his mouth. Melted butter. Straight concentrated whipping cream. Advocado. Etc.  The problem is before we decide based on the healthiest options etc...is that the taste IS a huge issue.  If he refuses to eat it...we are no further ahead.  The advocado is out.  He won't eat it.  The whipping cream is the most in.  IF you know of a company that has a HIGH FAT, CALORIE, PROTEIN product with better ingredients, please let me know.
4. We have to get him weighed every 2 weeks at our pediatrician.

If he has not gained weight in 1 month we have to consider a feeding tube through the night. HOWEVER she said very clearly...if he does not gain weight with this...there is something terribly wrong that nutrition cannot fix.  Period.

Her words "he WILL gain weight. A TON. If not...we have to see WHY".

Dean and I....are skeptical. We have done so much and sure we'll add a few more calories but honestly he's getting a TON now with zero weight gain and (tmi) no formed poop.  Something is just not right.

Plastic Surgeon came in who was a resident during Azlan's surgery 6 years ago. He remembered me right away and asked about Azlan ;)  He had a resident with him and they were both very onto Taizi.

His priorities are:
 1. Cleft Palate.  His words "While palate repair is done at 1 year for SPEECH purposes and it's highly likely Taizi will never speak ... I'm sure going to give him every chance possible!!" wow. Thank you! Because so are we!  He said he wants palate to be the priority after heart repair. In the spring.  At that surgery he would also remove the ear cycts that leak continually.

2. Eyes. We have now been referred to a specialist and he wants to know more of whats going on with the eye but said included in Goldenhar syndrome (what all 3 boys have) is facial nerve issues sometimes isolated to the eye.  He said however he can operate and help a bit. He will implant "a small piece of gold" into the eyelid to give it enough weight that at night time it will close. He said the concern is an eye that never closes will have problems and can lead to more serious issues like blindness. It will NOT allow him to blink but will allow it to close completely at bedtime.

3. Ears. His preference is to wait til his 10 years to do his ears b/c at that time they take a RIB and make a full ear with it and can make it most 'average' looking.  At age 6 they can operate on the ear but cannot do the rib surgery til 10.  If you operate before age 6 (when ear is full adult size) then you will forever have a tiny ear even as an adult b/c you will stunt all growth during surgery.  Very fascinating.

Cranio Facial came back in and said she managed to squeeze us into a kidney ultrasound and spinal X-ray while we were there.  To say he screamed bloody murder from half way through the day on...is no exaggeration.  Picture screaming and multiply it.  Yes. We went from hysterical laughing as a reaction to fear to screaming.  The ultrasound was a nightmare.  I'm shocked he got any images. It took all of me with a cramp in my back b/c of the length of the exam to hold him down.  I had to leave the room for the xray b/c I "have a chance of being pregnant" ;)

Cranio doc called our ped immediately and got a plan going with him with the amount of blood work etc she wants done. I loved her. She was young and really attentive.  I think I heard from every professional we saw yesterday that "it's not often we see a parent so informed.  How do you know all this?" Honestly the answer is always the same. This is my child. I'm not coming in here like a robot....I've absolutely done my homework. Cranio doc asked if I have this huge database in my head and just record everything I hear. Ha...no but that sounds convenient.

So. The plan.

Dental appt on the 15th in Seattle.
Heart procedure on the 19th (which they stressed his PDA is very significant...his heart is very enlarged).
MRI, CAT SCAN, bloodwork, ABR hearing test, and every thing else we can combine under sedation.
Intense food changes to gain weight.
Palate surgery.
Eye exams and evaluations.
Eye surgery.



I got in the van after the appts ....at 5:45.  Yes 12 noon to 5:45.  My head was pounding due to needing my neck adjusted.  I know I know. Why do I wait so long...? My life is a tad busy.  I laid my head on the headrest in the van and almost started to cry.  We are not immune to feeling a tad overwhelmed by it all.  God knew all of this.  He knew I'd be unexpectedly pregnant.  Now 19weeks. He knew Taizi's needs...all of them. He knew this is only the beginning.  He knew it all.  And when I laid my head back I just let my mind go there. To Him.  And that is the only place the peace comes from.  It's this instant transfer from my shoulders ... to His.  I don't need to bear the burden of the stress of it.  He wants that burden.  Every day I have the same choice as you. To choose to live this day well.  Sometimes perhaps my decision is a bit more conscious than yours...but it's all the same.  My child is not dying of cancer in that same hospital. With me helplessly rubbing her feet and helping her vomit into the bin...again.  No. we are so blessed.  Our road is bumpy.  So is yours.  And it's times like this we are so thankful that regardless of where we are in our life...He's always the same.  He's our constant.


Last night on the way home Dean played my favorite song ever. I think. That's hard to say. God has used so many songs to speak deeply to me at just the right time. However..Tenth Avenue North speaks the music of my heart.  They put into a song...what my heart feels and beats.  I've written it before. This time I'll put a link to it. It may not be your style but listen the whole way through.  By the end...I'm in tears.


http://www.youtube.com/watch?v=MM-6rm1t9vY


So...we got home at midnight.  This morning I took his breakfast and added the tiniest tiniest amount of melted butter to it. You could not taste  it...there is no way.  Well what a fight.  This is the nightmare of it all.  I mean a fight.  A gagging, fit-throwing fight. Change and Taizi do not go hand in hand. This is going to be our biggest problem. Feeding him pediasure with whipping cream won't be a problem but fortifying every bite that goes into his mouth is going to be a big problem.  It ended with very little solid food and a bottle of pediasure so that didn't help at all.

It's hard when we get him finally into a routine and we have to change it. It's very difficult. Not difficult as in your healthy baby - difficult.  Difficult as in this little boy is seriously OCD about his food and once you get him in a routine...it's very hard to change it.


*** Updated:
thank you for all the notes we have received today offering us tips and advice.  I think I need to clarify. This is not simply just not gaining enough weight. Or gaining slowing etc.  This is a serious failure to thrive not solely based on his body weight. His bone structure is flailing.  His feet are in size 0-6 month robeez shoes...he's 3.5 years old! There's clear indicators that something is wrong at a deeper level. Also the diet plan is not intended to fully cure the problems, as we doubt it would anyway...but there is significant testing going on to find out WHY he's failing to thrive.  Clearly it's not all about nutrition...and may not be about nutrition...at all.  They are fully aware of that.  We have received so many suggestions today of great table foods. Yes...there are many high calorie, high fat table foods that we could puree or are already in puree form (mashed potatoes with gravy) but the big big problem is he absolutely won't eat it.  Remember where he's come from. Never having tasted food ever in his life until we forced it via syringe a few weeks ago.  Now he is eating it via spoon but there's only 2 baby foods he will eat.  We tried adding fats to those foods...even vanilla pediasure and he gags and gags and clamps his teeth shut.  So all table foods and otherwise "great tasting foods" (to us!) are out.  Our options are very very limited.  We can work with his bottle more but texture is really an issue there as well.  Yes intense blood work and testing is underway...even bone scans to see if his bones are indeed showing signs of growth (is in the plans).  The suggestion that has been written to us today that is actually being considered (due to a few other strong symptoms) is Cystic Fibrosis.  The medical team mentioned that a few times yesterday in Seattle.  There will be no stone unturned when it comes to his medical care and what we will do to get him the best treatment possible.  We are not satisfied with a bandaid solution (add fats to his diet) BUT if it's a bridge that allows us to get from here to there...even temporarily...then we will try.  I stated in this post that his history is significant.  Born at 3kg. 7 kg at 11months, 7.5 kg at 2 years and only 9.5 kg today at 3.5 years this has been a serious problem for a long time.  We saw many babies in his orphanage, all on the same deprived diet that Taizi was on and the majority of them looked well-fed and even chubby.  Taizi's is undoubtedly health-related and we (us and the medical team) are committed to get to the bottom of it as soon as we can. :)



8 comments:

  1. Hi Janice,
    you are obviously an amazing person worthy of admiration! ...in regards to Taizi's eating/drinking struggles...i have a daughter with classic autism and i know EXACTLY what you are talking about- she would rather starve than be force fed something not to her liking. i honestly feel like the nutritionist did you guys a disservice with her suggestion. i mean, she wanted to do the right thing but my gut (and i suspect ur gut) is saying there is a biological reason (e.g. heart defect or metabolic issue or hormonal issue) behind Taizi's slow/or should I say no weight gain. I suspect if you continue to try the Pediasure route, he may even lose weight? Why put yourself through this if your gut is telling you it isn't going to work? Maybe u should give the nutrionist a call and discuss the *&%$ u went through trying to feed Taizi the new stuff and see if you guys can 'skip this part' and move on to further testing?? Hopefully they will suggests a local blood draw and begin testing. ....What do you think?? Not trying to add to ur load here just feeling for you!!

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  2. Hi Kristi :) I should have been more clear. He is absolutely going under extensive testing at the same time. So this plan is not replacing the real issue and I was very clear about that with them. I don't want a bandaid, clearly something is wrong and we need to address it. We are doing a lot of blood work and further testing including perhaps a bone scan to see if his bones are still growing etc etc. They do believe there is a reason even beyond the heart defect (as he's had that since birth) and are concerned his body may be done growing due to his conditions. Not only is he not gaining but the size of his hands and feet are tiny. Alarmingly tiny. Thanks for your feedback! Yes you can empathasize how changing a child's food really works! UGH.

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  3. So many of you have taken the time out of your day today to send us helpful information! Thank you! Keep them coming.

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  4. Janice,
    I am new to your blog but I amazed by your story! You and your husband are angels for taking on everything you have! You mentioned the Pediasure issue, I use a product called Isagenix. Isagenix has helped many people loose weight but is also has helped children with autism and Downs. Isagenix shakes are a meal replacement with 240 calories, 24 grams of protein, and low in fat (only 6 grams) this doesn't help in the fat area but it could help in other areas. If you are interested in learning more visit http://www.isagenix.com/us/en/isaleanshake_new.dhtml Just a suggestion. Taizi and your family is in my prayers.

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  5. Thank you Megan! Nice to hear from you:) We have a fantastic protein supplement but yes the fat is an important piece.

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  6. Janice,
    ...It's been so nice to "meet" you. I rarely meet parents who have children with issues that cannot be repaired (my daughter also has apraxia of speech and is nonverbal). She is our special angel from God!!!! There are IMMEASURABLE blessings that come from raising such special children!!!! What a gift it has been to view this world in a completely different way as Viv's mom! The people raising 'typical' children will never understand this; how could they? You only know the road you walk. But, a lot of worries and stressful situations sprinkled in there too (I remember I used to literally break out into a sweat trying to help calm Viv at Dr.'s appt's; it does get better...never easy peasy but better
    :-). Please feel free to email me anytime u need to "talk".

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  7. Thank you Kristi! I'd love to hear your story! Thank you for taking the time out of your busy schedule to read our story and say Hi to me. I really appreciate it!

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  8. The professionals are probably already aware of this product, but just in case...
    http://www.nutriset.fr/en/product-range/nutriset-product-range.html

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