Gwenn sings

Gwenn joined the school choir this spring - here she is singing at the MLK Jr. event just a week ago! She loved it, and since it's the only school club I can get her to do, we'll keep it up!

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!

Did I fail to mention...

In Gwenn's grief of losing Viivi, Gwenn resorted to the scissors as an outlet for her sadness. Which resulted in mama having to fix the cut - fixing the non-existant bangs, and removing approximately 6" in length from the bottom to even everything out. All said, I think I may have missed a calling... but for now will stick with marketing. On the positive side of things, you can sure see her eyes now. :-)

We are now working to identify more constructive ways of dealing with being sad.

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?

Tulip-time

Each spring we make our way up to the tulip fields for a celebration of Gwenn's birthday, and as a welcome to spring. This year was fantastic, with lots of pretty blooms, moderately nice weather (meaning it only rained a bit) and lots of fun. We had a great time, and everyone was nice and tired by the end of the day.

Tulips

One... Two..... Three............ Four...........

Six........... Seven................ Eight.......................

Nine!

Each year for Gwenn's birthday, we head to the tulip fields and take pictures. It's a great way to chronicle her - and to celebrate her birthdays with us. This is a look through the years!

Bangs!

After telling Gwenn at least 3 times a day "If you don't keep your hair out of your face, I'll cut your hair and give you bangs", on Sunday night Gwenn finally replied "OK." So, within 90 seconds this is the result. She loves the new look, and best - no dealing with clippies or having mommy constantly asking to pull the hair back. Life is good.

Braces, Part Deux

After months of RPE's and Schwartz Devices doing their work, today started the next phase of our orthodontic adventure - actual braces, sporting cool pink bands... They are on the 6 permanent teeth that Gwenn has, and as you can see there are spaces from recently lost teeth on each side of the front teeth for the new teeth that will (hopefully) come in soon.

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!

Hippie Chicks

Thanks to Schmarr, who is on my team and got a bit crazy with her tie-dye last weekend. Thanks so much for these great shirts! They LOVED wearing them this weekend!

Lilypie

Thanks to a new mom who joined WCC today, I have learned about Lilypie - a great online company that is creating customized tickers for bio and adoptive parents!

http://lilypie.com/

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..

Gwenn Pics

No issues getting pictures of Gwenn - it's just that it's almost all that I have! She loves having her picture taken when in the mood, but as you can see with the photo with Viivi, she is not always in the mood.

IEP Meeting

Yesterday was the IEP meeting that I called. I'm very lucky, because Dr. Lewis was able to attend the meeting and did a far better job of explaining what is going on with Gwenn, the impact to her school work, and her diagnosis (diffuse, static encepalopothy).

We left with the agreement that we are kicking off her re-evaluation now (instead of waiting the full 3 years) and they will work on pulling together the recommendation of her new IEP, taking into account Dr. Lewis' evaluation, along with her SLP evaluation and her OT evaluation.

Overall, it went well I think. However, I won't really know until I can see how the school translates the recommendations into action.