When it rains, it pours...

One of the things that I love to think about is all of the great, funky medical bits I'm exposed to with my children. The latest is a diagnosis of torticollis with my daughter, Gwenn. Here is what a website has to say about torticollis:

What is torticollis?
Torticollis is a twisted and tilted neck. When your
child has torticollis, he cannot move his neck very much, and holds his head to
one side. His chin might point up a little bit. Torticollis can appear
temporarily and go away again, but it can also be present at birth
(congenital).
There are several different types of torticollis:

Temporary torticollis (selecting only the one that Miss G has...)
For most children, torticollis goes away after a day or two. All your child
may need is some rest, and perhaps a towel wrapped around his neck to keep him
still. This temporary problem sometimes happens when your child’s lymph
nodes are hot and swollen (inflamed) after he has had an ear infection or a
cold. Torticollis can also develop if your child hurts his head or neck
and the joints between the bones in the neck swell and become sore.

Gwenn is now sporting a very styling cervical collar, worn backwards because she is so little that even the small one from the office was too big for her. Lucky girl! I'll try to get a picture with the collar tonight!

Mitochondrial Awareness Week

The week of September 21-27 is the Mitochondrial Awareness Week. Mito is a disease that strikes thousands of families, but so few people know about it. I was completely unaware of it, until the 8 year old daughter of a close friend was diagnosed with it just over 6 months ago. It is a devastating disease that robs those who have it of energy. Please watch the videos, and learn more about mito by visiting http://www.umdf.org/

Thanks!

Who needs morphine - we have a Gameboy....

Surgery went well yesterday, although the doctors needed to put a mic-key g-tube in, instead of a BARD button as we had hoped. That means for the next 12 weeks there will be a long tube coming out of the tummy, and then it will be replaced with the mic-key button. On the other hand, we won't have to worry about it getting pulled out or any gymnastics mishaps. The first few hours were pretty rough, and while morphine did help, the Gameboy offered just as much comfort and distraction.

If all continues to go well, we'll be home later today and back to school by Monday. Pray for a speedy recovery, no infections and continued willingness to let people look at, and poke at, her tummy...

Medical Updates...

So tomorrow I'll be offline most of the day as we go through Upper GI testing prior to the g-tube (a BARD button) surgery next Wednesday. Hopefully she will get the barium drink that tastes like soda instead of the one that is like milk of magnesia (which she won't drink). Cross your fingers, and I'll post more soon...

Medical Updates...

We finally had our GI visit with the doctor at Children's yesterday, and now have the date set for Gwenn to get her g-tube. It will probably not be a mic-key, but rather a newer type called a bard peg, that supposedly is easier on her, stays in well, is still surgically sewn into place (for her gymnastics) - and can be in place for the year or more they say we'll need it.

Next week we'll have her upper GI testing done, and then the week after will be the surgery. We'll be at Children's for only two days if all goes well, and they will also do the 24 hour PH probe while we are there - measuring her reflux, etc. The big negative is that we will delay two weeks of feeding therapy, but in the long run this is the right thing to do.

I'm guessing the week of the surgery will be her first week back at school, but we'll just have to live with it.

Weight for G is now at 59 pounds!

Weight...and waiting

Well, we don't really have an animal scale, but I liked how this one looked. Gwenn has moved, in animal terms, from mouse to moose. Well, maybe not a moose yet - more like a mid-sized dog. Definately not a pig, but doing better. Gwenn now weighs 58 pounds! Since the hospital 2 months ago she has gained 14 pounds, and gone from the 1st percentile to the 24th percentile in weight for her height/age.

So the waiting game starts. We'll keep the ng-tube since she still doesn't eat enough orally to maintain or gain weight. The Periactin is helping - I think that is what has made the difference. Two weeks ago she was at 52 pounds - and the last 6 pounds were in the past 2 weeks since starting the Periactin. It's also helping give healthier skin, but no relief to the itching.

The doctor is open to some of the other areas to investigate - we are waiting for a GI consult at Children's, will follow up again on her EEG/VEEG to ensure that there are not "silent" seizures that are occuring, and they are willing to consider researching mito. Now, the chances are low, but since a good friends daughter has been diagnosed, it is worthwhile to consider since Gwenn does fit in the high level definition for mito.

So, we are setting out for vacation - not only from work, but from therapies and doctor appointments. The craziness will start again when we return, but I will enjoy it while we are gone!

Loving the tube

Well, it's been a week and two days since the ng-tube has gone in. Today was weigh-in day with the pediatrician, and Gwenn has gained a whomping 3 pounds since last Monday. Now - keep in mind that she has gained only 2 pounds during the last two years, so this is a huge deal.

The ng-tube stays put, and will continue to be part of our lives. The alarm goes off only about 2-3 times per night right now, so I'm assuming that means that I'm getting better at setting the darn thing up, so Gwenn isn't rolling on it as much. Yay. However, it feels a bit like having an infant again - up at all times of the night. My sleep is not doing as well as G's weight.

Heading home

Well, we are heading home tonight and Gwenn will continue feeding through the ng-tube for at least 4-6 weeks, or until we hear that she has made significant weight gain and can remove it. If it turns out to be super long term, g-tube may be an option, but for now we'll just move forward... Keep on keepin' on...

So we'll do the feedings each night, and the tube stays in. She can go to school and gymnastics. And, we will have follow ups with the psychiatry unit at Children's, as well as the Feeding Therapists at Valley Medical.

The picture above is with Lambie, Gwenn's longest companion who is almost as much of a requirement as baba. Lambie has been to China and back two times, travelled all over the US, been thrown up on, peed on, and abused terribly. However, she has also been loved to pieces and is a nightly companion for the past 8 years. As Gwenn deals with things, so does Lambie.

Call us later tonight - we'll be home...

Update

Well, day two is now past, and Gwenn is sleeping comfortably for another 12 hours of overnight feeding. She started out yesterday at 20.2 kg, and today at weigh-in was 20.1 kg. I'm not sure if this is normal. Tomorrow is the day that we are anticipating seeing a weight gain, so prayers from all are appreciated. If she doesn't gain, then they will start to investigate things in the metabolic range, as well as absorbtion issues...

We saw a feeding specialist today - I had never heard of that, nor of Feeding Therapy! Why, with all my reading, did I not stumble across it, I can't say. But Gwenn will qualify for feeding therapy. Children's tells us the best therapists are at Valley Medical in Renton, so I've already looked them up and will phone tomorrow for an appointment. It was very interesting watching the therapist work with Gwenn - I learned some new things today that hopefully will translate at home.

I'll update more in the morning - I'm tired and ready for bed....

At Children's

Well, Seattle Children's Hospital is a great organization. We arrived and got settled in quickly, and soon had met the resident, our attending, the nurses and the nutritionist. We had our lunch, and Gwenn is now has a ng-tube. This is a temporary tube up her nose and into her tummy that will feed her overnight. She has been a good sport most of the day, but is mad at me right now since I found her taking off the tape that holds the tube in place. It had to be replaced, and she had a small scolding by the nurse. The smiles that we saw earlier have now been replaced by scowls.

Gwenn has allowed a blanket over the bed to keep her warm, but not yet consented to getting under the covers. That would mean that she is staying.

So far she has run the batteries out of the Gameboy, and is currently working on bringing the DS to the same position. We have watched two horrendously bad movies that she forced me to watch (and wouldn't let me turn off when she got bored with it!) and more TV than I would like. We have had some great time reading together - I'm reading "Betsy and Tacy" - childhood favorites of mine. I've got to run - we are going to read more now. I'll update more tomorrow and let you know how the first night of feeding goes.

Update

After Gwenn's check and weigh-in yesterday, it was agreed that we would voluntarily admit Gwenn to Children's Hospital on Monday. She will be fed via a feeding tube, and in all likelihood have a feeding tube (g-tube) implanted on Tuesday or Wednesday. We'll also take advantage to of being there to ensure that the food issue is one of calories, and not a metabolic issue, we'll have a psych consult, see a dermatologist to confirm the neuro-dermatitis that has plagued Gwenn for the past year - and try to deal with the most pressing issues.

I'll keep updates posted as to how Gwenn is doing and what is going on.

Ouch

Well, tonight we had a great visit to the after hours clinic. It was nice to see Steph, Jay and Julia there (sorry about the bite - it does get better) - and we had a nice visit to find out why Gwenn's mouth is swollen to at least 2x its usual size.

So what we know: it's not a canker sore, it's not any other lession in her mouth, it's not her gums, it doesn't appear to be her braces.

What we don't know: why her mouth and cheeks are swollen.

So we are going to try a mouth wash for her before meals that will numb her mouth, and make it easier to eat. Let's hope that it works. Today she ate a small amount of ice cream, a small cup of milkshake, some milk, some OJ, and I'm not sure what else. Not enough. Any ideas for food for sore mouths?

SPD in the News

Great, short video on Sensory Processing Disorder, which Gwenn has been diagnosed with a few years back. This is a great overview for what we are dealing with. Too bad the STAR Center isn't here in WA - it has a great reputation!

http://cbs4denver.com/health/sensory.processing.disorder.2.659686.html

Nutritionist

Today I met with a nutritionist about Gwenn and her eating. She will be 9 in April, and today had a strong weigh in at 46 pounds - an all-time record. However, she used to be at the 20th percentile up until about 2 years ago, and has been declining ever since, and now is in the 1st percentile for weight. Obviously this is going the wrong way.

I learned some of what I knew - Gwenn is complex, and her eating issues are also complex. The nutritionist we saw is going to speak with a colleague about Gwenn - one who specializes in eating disorders in young children, to see what else we can do.

Our immediate goal is to add at least 500 calories a day to what Gwenn is eating. We'll do that through things like the Larabar (200 calories), ReLiv nutritional supplements (100 cals), moving back to whole milk (another 100 cals) - and trying to get more food like peanut butter into her. Personally, I feel the last one is a losing battle - all she ate for 2 years was peanut butter, and I think she is still full of it!

It's hard to watch your child not eat, and try everything to get her to take in food. Her situation is more complex, as her SPD issues make it so that she may not be getting pleasure receptors in her brain receiving the message of full or hungry, liking or loving foods, etc. So she just doesn't eat. It's pretty crazy, but my goal is that by next September she will have hit 50 pounds!

Brain Damage and 5 Stages of Denial to Acceptance

OK. The whole diagnosis of brain damage has settled in, and I'm now in the phase of denial and acceptance called "stupidly silly". I believe that comes after the bargaining stage, and before the full acceptance stage... It is where I am now making off the wall comments about my child with brain damage. Sort of like Adam Sandler to Drew Barrymore in the movie "50 First Dates" - Gwenn often will remind me of 10 Second-Tom... And I'm also reminded of how all kids are not too far from the whole Bill Cosby routine on children and Brain Damage..

Bad news sucks

So this morning I'm filled with sadness, a bit of anger, and still a sense of purpose. A few weeks ago I got what was, in my little world, a devastating result for Gwenn's neuropsych testing: permanent brain damage. But today everything is moved into perspective quickly with the results that one of my best friends, Lorna, received on the health of her daughter, Penelope.

Penny was also adopted from China, and since coming to the US has had numerous issues with her health - starting with a funny limp when she came home at two. At first there were unusual ideas of what occured - polio in China (confirmed), in uetero stroke (not), hemiplegia (nope) and many others. But in the last year a new diagnosis was floated around: mitochondrial disease.

I didn't know much about mito when Lorna first told me about it, but what I learned let me know that it was no good. Well, today Lorna got the news that she was expecting, but still not ready for - that Penelope has a very serious form of the disease. Actually, of all the scenarios, it was the worst case.

So I've been wondering - between this news and what I had heard about Gwenn - why these kiddos are so often ill, and is it worth it. It hasn't taken long to answer the last questions, hell yes, it's worth it. There are so many kids who need homes, and all are worth it. I'm not sure if I'm going to make a difference, but for one child, it is an impact and a life-changing event.

I don't think it's because the Chinese, or any other country, treat their kids in institutions badly. I think it's just that kids don't belong in institutions. They don't get the touch and attention that they so badly need in order to thrive, not just survive. So often these kids come, and their brains haven't developed. They can't form attachments correctly, since they were never held. They may have medical issues that led to their being abandoned, or simply were abandoned due to the one child policy, pressure for a girl or a "perfect" child. The one thing I've learned in life is that there is no perfect child, no perfect adult - and it's our differences and faults that make us what we are.

I'm sure I'll write more later, but I still need to digest this latest news.

Urgent Care and ER

If everything else wasn't enough, Lucy had me running all over this weekend. I wound up with a sick little girl who is thankfully doing better now. But, we spent a nice day yesterday in the local ER having CT Scans, etc. Thankfully she slept through much of it, and is back to her normal crazy self today. I, however, have still to recover.

Neuropsych Eval

Well, we have had the evaluation about 2 weeks ago, and about 10 days ago I got the results of the testing... and have been absorbing it and thinking about it since.

Basically, Gwenn has something that is called static encepalopathy - static (not changing) brain damage. It's something that is there, it won't get better, and probably won't get worse. She has severe frontal lobe issue, which regulates a significant amount in her brain, as well as right hemisphere issues. The doctor believes that her left hemisphere is compensating where it can, but it's been a long week trying to let it sink in that what we thought were just learning issues would now be serious, life long implications. And that my daughter does have significant issues with her brain. The bummer in most of this is dealing with the fact that this most likely came from neglect in the orphanage, or abuse, but most like neglect - which isn't really neglect, it's just a lack of one on one care that can be given to the large number of kiddos in the orphanages. But, it was avoidable.

So now it's trying to find what Gwenn can do well - she is persistent, charming and wants to please everyone. And we'll balance with what really won't ever work well - she will probably never be able to manage complex tasks and lifeskills, learn more than concrete thinking (no philosophy for Gwenn, but that is probably OK), and will have many issues to overcome as she continues to mature.

I guess the good news is that I can go back to the school district - again - and remind them that Gwenn's issues are not behavioral, but rather medical as I've shared before. And I'll have more information to share with them on how Gwenn needs to be taught in school, and we'll work more closely on building an IEP that is more reasonable for her and what she can and cannot accomplish.

Next step is the school meeting - I'm working on that right now.

I think right now I'm still in a bit of denial. I'm still crying, as I should. I am sad for what Gwenn may not grow up to be, and the things that she could have accomplished. She is the same girl she was before we got the diagnosis, but now that it is in black and white and it's so concrete and final, it's been hard. I've learned to say that I have a special needs child, but now I really do have a special needs child. And it's not something that will go away in time and get better, and that has been very hard to absorb. My sense of humor is starting to come back, so that must be a good sign, but it's been a very hard week. I would have written about this sooner, but I just haven't had the energy to deal with it - or to put it in writing. That would make it too real.

Neuropsych Eval

Well, after 5 hours of testing yesterday, Gwenn completed her neuropsych eval. I'm pretty excited. By tomorrow we'll have initial results from the doctor and have an idea of which direction we should be heading. Exciting!

Medical Updates, while we are at it...

Since I'm in here, we have lots of medical updates to share.

Lucy: Now that we have confirmed that she is 6-10 months younger than her paperwork states, we need to get a full cardiac work up. Except that Childrens hasn't opened it's schedule for 2008 yet - so each Monday I get to call and wait on hold, hoping to find out if the calendar is open. Finally today I got through and have an appoinment for late January. http://heart.seattlechildrens.org/home/

Ella: Ella has now been officially diagnosed with Thalassemia - an inhertited, genetic blood disorder that causes chronic anemia. In her form, she has inherited from only one parent, which is very, very good. However, she will need to confirm that her S.O. is not also a carrier - the version from two parents is devastating. Worse case, she can adopt - which she tells me already she wants to do. Learn more at: http://www.thalassemia.org/

Gwenn: Gwenn, Gwenn, Gwenn. How much to say here. This week we have her MRI scheduled at Childrens. Next month is the full neuropsych eval and her VEEG at Childrens. The social worker with the pediatricians office is also working on a care meeting with all of the folks involved - pediatrician, neurologist, neuro-psychologist, speech therapist, occupational therapist, regular therapist, etc. Gwenn has also been dismissed from the counseling at the Kindering Center that we were taking advantage of. They believe that she is dealing with attachment disorder, and so we have a re-evaluation with Attachment Center NW next week. She was seen there just about 2 years ago, and they thought nothing was going on. However, the same issues are still here and amplified, and since the counselor has recommended, they are going to evaluate her again.

Some of you have asked to learn more about Sensory Processing Dysfunction, and other related issues... you can learn more at some of these places:
http://www.sensorynation.com/
http://www.sinetwork.org/home.html
http://www.comeunity.com/disability/sensory_integration/
http://www.brighttots.com/sensory_integration.html
http://gigli.tripod.com/therapies/sensitivities.htm
http://www.incrediblehorizons.com/sensory-integration.htm
Eide's Neurodevelopmental Blog
Developmental Trauma Disorder
Attachment Center NW
Families for Effective Autism Treatment
Great list of books about SI

Lara: Still sound like I'm about to hack up a lung. Cannot WAIT for this to be done.